Re: DETOXIFICATON IN AUTISTIC SPECTRUM DISORDER ...

[Guest guest]

In a message dated 6/6/01 2:11:43 PM Central Daylight Time,

carltonl@... writes:

> What I think she is saying is that time released DMSA is

> not really taking out the mercury, in a child that has had

> mercury around for a long period of time. So, you are spinning

> your wheels and not really doing anything about the mercury or

> the health of the child.

While this is possibly true for some children whose elimination pathways are

not working at all, I think there are far too many cases where urine and

stool testing is showing high levels of mercury being released to believe

it's not pulling metals. It's got to be coming from somewhere especially if

earlier blood and urine tests showed none in the blood and then provocative

urine or stool shows high levels.

Correct me if I'm wrong o wise study watchers on this list, but aren't there

studies that show DMSA does enter the cells to pull out lead?

> If a parent was to use something other than the time released

> capsules, for example a liquid form of DMSA, they would know it,

> their child would be very sick or worst.

Perhaps I'm misunderstanding what you are saying here since I've only skimmed

the original post you sent (printed it out so I could read it carefully

later) but I think there are far too many cases of children getting better on

various forms of DMSA to assume that it would make all children sick or

worse. I think it is very important to share info about kids who became sick

or worse on DMSA but there's too many cases of improvement to make a sweeping

statement that if you don't use time-release, you'll get worse.

>>> numerous kids with impacted colons, and I know my

> child was one of them, that fluctuated between diarrhea and constipation.

That is a very common ailment among autistic kids and a good reason to do

bowel support before and during chelation. We have had a few periods of

extreme constipation during detoxification when using a variety of detox

methods. Both times my son started new chelators, first DMSA then DMPS, he

went through a couple of weeks of constipation. This is an area that I think

should be looked into.

> I am safe territory, most parents know from what I have

> written, that I am not in favor of using DMSA, they are

> comfortable coming to me, when their child has a bad reaction.

> So, I have heard the stories, and alot worries me, the lost

> of motor functioning scares me, and it should scare them.

Can you give more details about the folks who have reported a loss of motor

functioning? Was this temporary or permanent? I'd like to hear more.

>> In my opinion, if a child is having a bad reaction to DMSA,

> they don't need to be told to lower the dosage, they need

> stop using it.

I'd agree with that in some cases except for cases where too high a dosage

was recommended in the first place. Unfortunately, detoxing isn't an exact

science no matter which method you use (trust me, I've been through tons of

methods over the years and had ups and downs with many). Sometimes a

difficulty with a chelator can be due to the medicine itself while other

times it's due to releasing metals faster than the body can process them out.

For those who do choose to use DMSA, I think starting very low dosage and

building up is the wisest way to go.

> She maybe hoping that if you go through

> the steps, balancing electrolytes, adding the minerals, clearing up

> digestive issues, adding the fatty acids, then the nutrients,

> that by that point, you will not even worry about detox.

> Your child will be doing fine, and you and your child can go

> on with life.

That may be true for some kids who are not actually metals toxic. We went

that route for several years without knowing about the toxicity and it did

help alot but we found we were continuously putting out fires rather than

treating the cause of the problem. My son may be a bit different though

since we have a known toxic exposure in addition to the vaccines.

Gaylen

[Guest guest]

,

When kids " get worse " on DMSA it is in every case that I have seen, it is

temporary. It is usually when a load of metals is being dumped, followed by

remarkable progress. I have seen not only in my child, but many others in

our area remarkable progress and recovery. I tend to think think from what I

have read here, that the symtoms are only being repressed with the body bio

plan. I am so glad that we are taking care of the problem itself. You can

actually smell the metals in urine and bowel movements as they are being

removed. I am happy for any approach that helps our kids-what ever is

working keep it up.

's mom

[Guest guest]

> ,

>

> When kids " get worse " on DMSA it is in every case that I have seen,

it is

> temporary. It is usually when a load of metals is being dumped,

followed by

> remarkable progress. I have seen not only in my child, but many

others in

> our area remarkable progress and recovery. I tend to think think

from what I

> have read here, that the symtoms are only being repressed with the

body bio

> plan. I am so glad that we are taking care of the problem itself.

You can

> actually smell the metals in urine and bowel movements as they are

being

> removed. I am happy for any approach that helps our kids-what ever

is

> working keep it up.

>

> , I might could understand using DMSA for 19 days like

Dr.Kane found as the standard treatment, and correct me if I am

wrong, but some parents are still using the drug for over a year

now. Of course heavy metals are coming out, they are in the

environment. You cannot protect someone from heavy metal exposure,

unless you put them in sealed controlled environment.

I remember the study that Dr.Edelson did, and what he found

was gasoline (petroleum) chemicals in autistic children.

And I think they probably got that exposure in the car ride

over to his office. Do we detox them for chemicals too?

That is why I think Dr.Kane's method works, she starts with

the basics of human chemistry: electrolyte balance, mineral

balance, enzymes, fatty acids, and single nutrients.

She does it in that order, rebuilding health. She explains

the cell membrane, how cellular activity can shut down, or

get locked, that fatty acids will free cellular activity, and

thus there will be cell to cell communication. I don't really

understand all of it, all I can do is go by what I see, and

I saw my child, unconfused for the first time. I didn't think

it was possible for it to happen so fast.

I guess I expected more from the DMSA, like instant recoveries,

and it was not what I expected from Bodybio.

The day we got the Bodybio plan, I looked it over and I was

disappointed, about that time my husband came in from work.

He asked about it, and I told him, that I didn't see the

magic. So, he asked if I was going to use that therapy, and

I said no. He took it off my desk, read it, and told me that

it wasn't going to hurt to try it. I saw pecans and sunflower

seeds down on Forrest's list of foods, so I made a deal with

him, if he did the diet, I would give him the supplements.

Well, he did the diet, he crushed up seeds and nuts, and

he added them to Forrest's dishes. He added the oils and

made the chicken broth. It didn't take, but a couple of days

before I realized how much better Forrest was getting.

Well, I have been hooked ever since. Best, Forrest's Mom

[Guest guest]

,

Yes I believe you are wrong on the DMSA issue. used it for 3 months

and after a testing we had pulled out all the mercury from the body. We then

added the ala with DMSA and tested after about the third round. We were

pulling out more mercury and that was the mercury that had crossed the blood

brain barrier. I am glad the body bio is working for you, but my child is

basically recovered from autism, so I can't say enough good things about

chealation. If you met her you would see a normal child. I am new to this

list, how long has your son been doing body bio??? Is he recovered?

Jane ('s mom)

[Guest guest]

,

Why do you " know better " than to use DMSA? I just don't get how you are so

closed minded to any treatment that works! I am thrilled if the treatment

you are using works, but please don't be so negative about what is working

for many, many other people. Also, this has been far from easy for us. If

you read my earlier post this has been three years of hard work! We did 40

hours a week of an ABA/Lovas type program within our home, implemented the

gluten and casein free diet, did MRI's, over night eeg's, all the blood work

to check her biochemistry, and many many supplemets repairing all that,

auditory integration training, speech therapy, occupational therapy, horse

back riding therapy, secretin, and tons of floor time teaching her to use her

imagination and play. I am open to any therapy that works for our kids! I

don't criticize your program, please don't criticize ours.

Jane ('s mom)

[Guest guest]

, I love to hear success stories, you must be very happy that

your child has recovered.

It sounds as if it has been relatively easy for you to just

use this drug and have your child recover.

I don't hear that kind of story often. I have been reading

about the differences in the sexes, whereas boys will retain

mercury longer than girls, and I think overall, girls tend to

fair off better than boys. Maybe it is the fecal contents of

heavy metals that holds them back, or keeps them from eliminating

toxins faster.

We have had so much problems with Forrest, he has such severe

problems with constipation and diarrhea, we have been in the

emergency room twice and almost lost him, because of

intractable diarrhea.

When he started passing normal bowel movements, he started talking

and yes! he was acting like a normal kid.

All the kids in his class were very sick over some infection,

and Forrest caught it too, and he started having some bowel

problems all over again.

Now that he has cleared up, he is showing that progress again.

I cannot believe that I have again entertained the idea of

using DMSA again, because I know better. I know what is going

to happen to him. I wish it was that easy for us.

Best, Forrest's Mom

> ,

>

> Yes I believe you are wrong on the DMSA issue. used it for

3 months

> and after a testing we had pulled out all the mercury from the body.

We then

> added the ala with DMSA and tested after about the third round. We

were

> pulling out more mercury and that was the mercury that had crossed

the blood

> brain barrier. I am glad the body bio is working for you, but my

child is

> basically recovered from autism, so I can't say enough good things

about

> chealation. If you met her you would see a normal child. I am new

to this

> list, how long has your son been doing body bio??? Is he recovered?

>

> Jane ('s mom)

[Guest guest]

, I haven't read but maybe a two hundred messages from this

list, when I was on last year, I mass deleted most of the messages.

I don't know your history, I apologize, I took from the merit of your

message to me that it had sounded easy.

I started reading some of the messages on mercury after my child

had a set back, and I thought that maybe they were right that

the DMSA is what we needed.

We drove a hundred miles, because every doctor within in that

radius wouldn't touch doing a detoxification on my son.

The doctor that we found, even set up some crazy dosage schedule,

so I found his wt. and amount from this list or another parent

using DMSA. It has been a while, I don't remember exactly.

The next morning my son looked pitiful, he was weak, he was

white, and if I remember correctly he looked nauseous, too.

It frightened me, and said I something on this list about it,

and the months that followed, several parents have told me their

horror stories. So, yes, I am afraid of it now, and with what

I think is enough reason.

I am not criticizing your program, gosh, that seems to be the

message that every one gets if you talk about side effects.

I will sign off, I thought my posts were generally about mercury

detox, but it sure seems like if you are not using DMSA, your

the enemy. Best, Forrest's Mom

> ,

>

> Why do you " know better " than to use DMSA? I just don't get how you

are so

> closed minded to any treatment that works! I am thrilled if the

treatment

> you are using works, but please don't be so negative about what is

working

> for many, many other people. Also, this has been far from easy for

us. If

> you read my earlier post this has been three years of hard work! We

did 40

> hours a week of an ABA/Lovas type program within our home,

implemented the

> gluten and casein free diet, did MRI's, over night eeg's, all the

blood work

> to check her biochemistry, and many many supplemets repairing all

that,

> auditory integration training, speech therapy, occupational therapy,

horse

> back riding therapy, secretin, and tons of floor time teaching her

to use her

> imagination and play. I am open to any therapy that works for our

kids! I

> don't criticize your program, please don't criticize ours.

>

> Jane ('s mom)

[Guest guest]

,

So far as I know, this list is " to discuss the connection between Autism &

Mercury " or something of that ilk, not just to discuss DMSA & ALA only. It is a

sad day if you feel that you can no longer discuss anything on the

topic, I hope that you stay.

Jon.

[ ] Re: DETOXIFICATON IN AUTISTIC SPECTRUM DISORDER

...

, I haven't read but maybe a two hundred messages from this

list, when I was on last year, I mass deleted most of the messages.

I don't know your history, I apologize, I took from the merit of your

message to me that it had sounded easy.

I started reading some of the messages on mercury after my child

had a set back, and I thought that maybe they were right that

the DMSA is what we needed.

We drove a hundred miles, because every doctor within in that

radius wouldn't touch doing a detoxification on my son.

The doctor that we found, even set up some crazy dosage schedule,

so I found his wt. and amount from this list or another parent

using DMSA. It has been a while, I don't remember exactly.

The next morning my son looked pitiful, he was weak, he was

white, and if I remember correctly he looked nauseous, too.

It frightened me, and said I something on this list about it,

and the months that followed, several parents have told me their

horror stories. So, yes, I am afraid of it now, and with what

I think is enough reason.

I am not criticizing your program, gosh, that seems to be the

message that every one gets if you talk about side effects.

I will sign off, I thought my posts were generally about mercury

detox, but it sure seems like if you are not using DMSA, your

the enemy. Best, Forrest's Mom

> ,

>

> Why do you " know better " than to use DMSA? I just don't get how you

are so

> closed minded to any treatment that works! I am thrilled if the

treatment

> you are using works, but please don't be so negative about what is

working

> for many, many other people. Also, this has been far from easy for

us. If

> you read my earlier post this has been three years of hard work! We

did 40

> hours a week of an ABA/Lovas type program within our home,

implemented the

> gluten and casein free diet, did MRI's, over night eeg's, all the

blood work

> to check her biochemistry, and many many supplemets repairing all

that,

> auditory integration training, speech therapy, occupational therapy,

horse

> back riding therapy, secretin, and tons of floor time teaching her

to use her

> imagination and play. I am open to any therapy that works for our

kids! I

> don't criticize your program, please don't criticize ours.

>

> Jane ('s mom)

[Guest guest]

,

I feel the same as Jon. I think it is important to discuss all

options. I think the problem is when you imply that DMSA is used

because it is the easier choice. It's safe to say that noone on the

board has chosen to use DMSA because it is easy, because NOTHING

about this is easy. I know that I have learned that nothing will work

for every child, so I don't dismiss something because it didn't work

for someone else. I also don't TRY something because it DID work for

someone else. I'm using DMSA because my son is mercury toxic....

PERIOD. If it doesn't help my child, I'm comforted in knowing that

there are other alternatives out there.

> > ,

> >

> > Why do you " know better " than to use DMSA? I just don't get

how you

> are so

> > closed minded to any treatment that works! I am thrilled if

the

> treatment

> > you are using works, but please don't be so negative about what

is

> working

> > for many, many other people. Also, this has been far from easy

for

> us. If

> > you read my earlier post this has been three years of hard

work! We

> did 40

> > hours a week of an ABA/Lovas type program within our home,

> implemented the

> > gluten and casein free diet, did MRI's, over night eeg's, all

the

> blood work

> > to check her biochemistry, and many many supplemets repairing

all

> that,

> > auditory integration training, speech therapy, occupational

therapy,

> horse

> > back riding therapy, secretin, and tons of floor time teaching

her

> to use her

> > imagination and play. I am open to any therapy that works for

our

> kids! I

> > don't criticize your program, please don't criticize ours.

> >

> > Jane ('s mom)

>

>

>

[Guest guest]

<< Forrest's Mom wrote, in part:>>

> , I might could understand using DMSA for 19 days like

>Dr.Kane found as the standard treatment, and correct me if I am

>wrong, but some parents are still using the drug for over a year

>now. Of course heavy metals are coming out, they are in the

>environment. You cannot protect someone from heavy metal exposure,

>unless you put them in sealed controlled environment.

,

please excuse my crabiness on this topic, but it seems to me that

if one does chelation " quickly " you would (rightly) complain that

it is dangerous; whereas if done " slowly " you still complain that

it is too slow. Can't win here.

I think the " 19 days " you refer to may also be related to Dr. Kane's

observation that chelation was " dangerous " . Doing chelation for 19

days sounds (to me) either ineffective (low dose) or dangerous (high

dose).

What is wrong with doing chelation for a year or two, if it gets the

metal out?

Oh--- right, you think it is just getting out the metal that is

current ongoing exposure--- humm. I'm not sure what to say to refute

this. I sure *hope* the exposure in " day to day life " is not enough

to measure as toxic levels in urine or feces!

Please note, for the record (just in case): I have said nothing here

against the method you are using. I have (in prior post) expressed

interest in whether that method results in reduced mercury.

best regards,

Moria