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Re: just one decline after another

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We didn't do well with the diet either. Lost language, lots of it, all in three

weeks. Also noticed the lack of concentration you mentioned. Plus, she looked

really bad, not healthy.

After three weeks we went back to the dr and reported the decline. She commented

that in the beginning of the diet, there were some negatives and some positives.

Only we didn't see the positives. Both my daughter and I tried to get the logic

of keeping her on the diet when she was clearly getting worse. I don't subscribe

to the approach that if an intervention is a good thing, it creates lots of

sustained negative side effects. If an intervention is a good thing, they should

get better, not worse.

We told the dr we were logical people who would have to understand how losing

language was a positive or even benign event in order to continue the diet,

especially since she had not tested allergic for either milk or wheat. She told

us unless we were willing to continue with the diet, she would not participate

further. We declined both the diet and her offer to continue participation. We

have never been sorry. Within two weeks off the diet, the language came back and

she looked lots better.

Andy wrote a very informative, common sense approach to diets in the files

section. For some kids those allergy tests can be right on the money, for other

kids, I do wonder if they are accurate.

Good luck,

[ ] just one decline after another

I feel like my son is never going to get better. We started seeing a

doctor who does chelation in october and he gave him a food allergy

test. It came back with +4 reactions on a lot of things and we

totally eliminated them from his diet. Since then, he has regressed

extremely. He used to be able to sit for an hour and do a puzzle and

now he can barely put 2 pieces together. He used to do his work so

well at school, they were always really impressed. Now, he won't do

anything. Nothing motivates him whatsoever. He spends all day

begging for tape to put on index cards or making structures out of

things around the house. All since starting the diet...and please

don't tell me it is withdrawal...he started this diet going on 3

months ago now. Does anyone else know a child who has regressed

because of the diet? I'm so frustrated. And now his doctor won't let

us start chelation because he said my son's liver enzymes are

elevated. I just feel so hopeless. Now my son's father has said he

doesn't think he can stand it much longer and may have to leave. I

need someone's good advice, please!

=======================================================

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>

> I feel like my son is never going to get better. We started seeing a

> doctor who does chelation in october and he gave him a food allergy

> test. It came back with +4 reactions on a lot of things and we

> totally eliminated them from his diet. Since then, he has regressed

> extremely.

Screw the diet and feed him what you were feeding him before!

Nell

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First, tell your son's father to buck up and help recover his son.

I am so damned tired of parents bailing on one another. Sounds like

he is a non-believer (I live with one). What is he having trouble

with, the whole biomedical:Autism connection or the regression?

Stress is Hell, but the reaction to flee just pisses me off to no

end. Sorry about the rant. Unless he is dangerous to you and/or

your children, I would work on the marriage, too.

Is 'the diet' you are following GFCF plus all of the items with a +4

reaction? What DOES your child eat? My son didn't do too well on

the diet sometimes due to yeast. The GFCF diet can be a huge yeast

feeder if you are not careful (especially with those picky eaters).

What is your yeast protocol?

Were the liver enzymes not elevated prior to starting the diet (do

you know?). What did the doc offer for liver support? Exactly what

is elevated; and how elevated are they?

I can tell you that your son *can* get better. I think it is the

one thing I feel comfortable in promising every parent... you just

have to find what works for your child. Not the advice you are

looking for, I know, but time to hunker down and play detective.

That is what we are here for!

I'm sorry things are so tough at home.

Pam

p.s. personally, I would dump the diet and see if I can get my

child back to the original baseline. Perhaps not the best

reaction! Kind of like starting over.

>

> I feel like my son is never going to get better. We started

seeing a

> doctor who does chelation in october and he gave him a food

allergy

> test. It came back with +4 reactions on a lot of things and we

> totally eliminated them from his diet. Since then, he has

regressed

> extremely. He used to be able to sit for an hour and do a puzzle

and

> now he can barely put 2 pieces together. He used to do his work

so

> well at school, they were always really impressed. Now, he won't

do

> anything. Nothing motivates him whatsoever. He spends all day

> begging for tape to put on index cards or making structures out of

> things around the house. All since starting the diet...and please

> don't tell me it is withdrawal...he started this diet going on 3

> months ago now. Does anyone else know a child who has regressed

> because of the diet? I'm so frustrated. And now his doctor won't

let

> us start chelation because he said my son's liver enzymes are

> elevated. I just feel so hopeless. Now my son's father has said

he

> doesn't think he can stand it much longer and may have to leave.

I

> need someone's good advice, please!

>

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I don't subscribe to the approach that if an intervention is a good

thing, it creates lots of sustained negative side effects. If an

intervention is a good thing, they should get better, not worse.

ITA. Although it's worth mentioning that Houston enzymes often cause

some pretty dramatic bad responses at first, although even then there

are glimmers of something positive going on as well.

And I meant to say, so sorry about your son's father. The stress of

autism is so intense that it's a miracle any of us manage to stay

married. I hope his hopelessness passes.

Nell

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We started GFCF in March 2003. By September 2003 my

son, now age 7, lost all speech. I am NOT saying that

this regression was caused by the diet. He still has

no speech and were are now on an even more restricted

diet.

When you remove certain foods like milk and bread,

you remove an important source of calcium. That

was the case for my son. I am certain that he

was calcium deficient for months because we were

unaware of this issue.

You need to be supplementing the nutrients that

are in your eliminated foods.

It has taken us over two years, now almost three,

to get a handle on this stuff.

Recently, for instance, we stopped all supplements

because of a surgery. We found that his bowel

movements

improved dramatically. We the surgery was over, we

restarted supplements again and his bm's went bad

again. So, we eliminated most supplements again

and discovered the

ones the were causing the problems. In our case

it was a popular multi-vitamin and a popular set

of liquid minerals that were the culprits.

My point is that for years we struggled with bad

bm's because of what we were doing!

We have found that if we quit what we are doing

when those things are apparently are having bad

effects,... quitting,... and

restarting " low and slow " is useful.

Part of the parents' task is to learn his or

her child. The doctor will never learn your

child because he does not have the time or

the daily data. The parents have to be a major

part of the " cure. " It takes time both to learn

this stuff and to learn your child and what works

for your child.

I am so sorry you are having this trouble. You

are certainly not alone in the experience. :<

Good luck.

--- dannenedrummond <dannenedrummond@...>

wrote:

> I feel like my son is never going to get better. We

> started seeing a

> doctor who does chelation in october and he gave him

> a food allergy

> test. It came back with +4 reactions on a lot of

> things and we

> totally eliminated them from his diet. Since then,

> he has regressed

> extremely. He used to be able to sit for an hour

> and do a puzzle and

> now he can barely put 2 pieces together. He used to

> do his work so

> well at school, they were always really impressed.

> Now, he won't do

> anything. Nothing motivates him whatsoever. He

> spends all day

> begging for tape to put on index cards or making

> structures out of

> things around the house. All since starting the

> diet...and please

> don't tell me it is withdrawal...he started this

> diet going on 3

> months ago now. Does anyone else know a child who

> has regressed

> because of the diet? I'm so frustrated. And now

> his doctor won't let

> us start chelation because he said my son's liver

> enzymes are

> elevated. I just feel so hopeless. Now my son's

> father has said he

> doesn't think he can stand it much longer and may

> have to leave. I

> need someone's good advice, please!

>

>

>

>

__________________________________________________

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how old is your son?

Kathy

>

> I feel like my son is never going to get better. We started

seeing a

> doctor who does chelation in october and he gave him a food

allergy

> test. It came back with +4 reactions on a lot of things and we

> totally eliminated them from his diet. Since then, he has

regressed

> extremely. He used to be able to sit for an hour and do a puzzle

and

> now he can barely put 2 pieces together. He used to do his work

so

> well at school, they were always really impressed. Now, he won't

do

> anything. Nothing motivates him whatsoever. He spends all day

> begging for tape to put on index cards or making structures out of

> things around the house. All since starting the diet...and please

> don't tell me it is withdrawal...he started this diet going on 3

> months ago now. Does anyone else know a child who has regressed

> because of the diet? I'm so frustrated. And now his doctor won't

let

> us start chelation because he said my son's liver enzymes are

> elevated. I just feel so hopeless. Now my son's father has said

he

> doesn't think he can stand it much longer and may have to leave.

I

> need someone's good advice, please!

>

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My son has improved without diet! Just chelation, supplements, and biomed.

YES, it can be done.

[ ] Re: just one decline after another

>

> I feel like my son is never going to get better. We started seeing a

> doctor who does chelation in october and he gave him a food allergy

> test. It came back with +4 reactions on a lot of things and we

> totally eliminated them from his diet. Since then, he has regressed

> extremely.

Screw the diet and feed him what you were feeding him before!

Nell

=======================================================

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All kids are different, for us it took longer than 3

months, sure glad we did not give up. We not only did

we removed IgG + foods, we removed corn, soy, peanut

butter, sager, and you would think he would starve.

Yes he did lose weight at the beginning, but now his

weight is back. This diet is not easy, must admit. We

saw regression but that is not a bad sign. Some kids

show improvement even after 6 months etc. I would give

it some more time before giving up, especially with

4+. HTH

[ ] just one decline after

another

I feel like my son is never going to get better. We

started seeing a

doctor who does chelation in october and he gave him

a food allergy

test. It came back with +4 reactions on a lot of

things and we

totally eliminated them from his diet. Since then,

he has regressed

extremely. He used to be able to sit for an hour

and do a puzzle and

now he can barely put 2 pieces together. He used to

do his work so

well at school, they were always really impressed.

Now, he won't do

anything. Nothing motivates him whatsoever. He

spends all day

begging for tape to put on index cards or making

structures out of

things around the house. All since starting the

diet...and please

don't tell me it is withdrawal...he started this

diet going on 3

months ago now. Does anyone else know a child who

has regressed

because of the diet? I'm so frustrated. And now

his doctor won't let

us start chelation because he said my son's liver

enzymes are

elevated. I just feel so hopeless. Now my son's

father has said he

doesn't think he can stand it much longer and may

have to leave. I

need someone's good advice, please!

=======================================================

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Share on other sites

We started GFCF in March 2003. By September 2003 my

son, now age 7, lost all speech. I am NOT saying that

this regression was caused by the diet. He still has

no speech and were are now on an even more restricted

diet.

When you remove certain foods like milk and bread,

you remove an important source of calcium. That

was the case for my son. I am certain that he

was calcium deficient for months because we were

unaware of this issue.

You need to be supplementing the nutrients that

are in your eliminated foods.

It has taken us over two years, now almost three,

to get a handle on this stuff.

Recently, for instance, we stopped all supplements

because of a surgery. We found that his bowel

movements

improved dramatically. We the surgery was over, we

restarted supplements again and his bm's went bad

again. So, we eliminated most supplements again

and discovered the

ones the were causing the problems. In our case

it was a popular multi-vitamin and a popular set

of liquid minerals that were the culprits.

My point is that for years we struggled with bad

bm's because of what we were doing!

We have found that if we quit what we are doing

when those things are apparently are having bad

effects,... quitting,... and

restarting " low and slow " is useful.

Part of the parents' task is to learn his or

her child. The doctor will never learn your

child because he does not have the time or

the daily data. The parents have to be a major

part of the " cure. " It takes time both to learn

this stuff and to learn your child and what works

for your child.

I am so sorry you are having this trouble. You

are certainly not alone in the experience. :<

Good luck.

>

> I feel like my son is never going to get better. We started

seeing a

> doctor who does chelation in october and he gave him a food

allergy

> test. It came back with +4 reactions on a lot of things and we

> totally eliminated them from his diet. Since then, he has

regressed

> extremely. He used to be able to sit for an hour and do a puzzle

and

> now he can barely put 2 pieces together. He used to do his work

so

> well at school, they were always really impressed. Now, he won't

do

> anything. Nothing motivates him whatsoever. He spends all day

> begging for tape to put on index cards or making structures out of

> things around the house. All since starting the diet...and please

> don't tell me it is withdrawal...he started this diet going on 3

> months ago now. Does anyone else know a child who has regressed

> because of the diet? I'm so frustrated. And now his doctor won't

let

> us start chelation because he said my son's liver enzymes are

> elevated. I just feel so hopeless. Now my son's father has said

he

> doesn't think he can stand it much longer and may have to leave.

I

> need someone's good advice, please!

>

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>

> I feel like my son is never going to get better. We started seeing a

> doctor who does chelation in october and he gave him a food allergy

> test. It came back with +4 reactions on a lot of things and we

> totally eliminated them from his diet. Since then, he has regressed

> extremely. He used to be able to sit for an hour and do a puzzle and

> now he can barely put 2 pieces together.

Give back the foods, preferably with enzymes, see if that helps.

http://www.houstonni.com/

When I added back wheat with enzymes, my son improved noticeably.

Dana

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--- Schembri <marquisschembri@...> wrote:

---------------------------------

>All kids are different, for us it took longer than 3

>months, sure glad we did not give up. We not only did

>we removed IgG + foods, we removed corn, soy, peanut

>butter, sugar, and you would think he would starve.

>Yes he did lose weight at the beginning, but now his

>weight is back. This diet is not easy, must admit.

.......(((( (We saw regression but that is not a bad

sign.))))).....

Sorry what I meant was no I don't see regression as a

good sign though, but maybe it's one way of showing

you something, doing it differently. We took the

offending food out, and still nothing, he got worse.

But when we digged a little deeper and took out others

foods, eg. corn soy, grapes oranges etc. that did not

show up on the IgG test, our son did improve allot.

More than we thought it would. If your Dr. is so gong

ho about the diet, what did She/He suggest to do? I do

not think being forceful on you is fare. Just dig a

bit more before giving up. JMO. Also supplements you

have to concider as well, not a easy task! But it can

be done, I know our son did great after a bad start.

You may want to try, milk thistle for liver support my

son showed high liver enzyems and MT helped. HTH Hang

in ther all the best,

>I would give

>it some more time before giving up, especially with

>4+. HTH

[ ] just one decline after

another

I feel like my son is never going to get better. We

started seeing a

doctor who does chelation in october and he gave him

a food allergy

test. It came back with +4 reactions on a lot of

things and we

totally eliminated them from his diet. Since then,

he has regressed

extremely. He used to be able to sit for an hour

and do a puzzle and

now he can barely put 2 pieces together. He used to

do his work so

well at school, they were always really impressed.

Now, he won't do

anything. Nothing motivates him whatsoever. He

spends all day

begging for tape to put on index cards or making

structures out of

things around the house. All since starting the

diet...and please

don't tell me it is withdrawal...he started this

diet going on 3

months ago now. Does anyone else know a child who

has regressed

because of the diet? I'm so frustrated. And now

his doctor won't let

us start chelation because he said my son's liver

enzymes are

elevated. I just feel so hopeless. Now my son's

father has said he

doesn't think he can stand it much longer and may

have to leave. I

need someone's good advice, please!

=======================================================

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These food reaction tests are so misleading sometimes!

Our daughter went through traditional/non-traditional allergy testing-

only 'slight' reaction to peanut. We had removed the peanut[and

others] years before because of what we saw with it. An IgG panel had

gluten and casein +1. We were told not to worry about the +1s.

Removing gluten and casein and soy has been one of the best

interventions for her. It totally controls what had been a horrible

seizure pattern that was unresponsive to medication. Have you ever

tried an elimination pattern to see what he may tolerate? We also

went through a period of elevated liver enzymes which docs attributed

to a growth spurt. I was frantic but they were right[that's their 10%

correct in our ballgame so far!] B.

>

> I feel like my son is never going to get better. We started seeing

a

> doctor who does chelation in october and he gave him a food allergy

> test. It came back with +4 reactions on a lot of things and we

> totally eliminated them from his diet. Since then, he has

regressed

> extremely. He used to be able to sit for an hour and do a puzzle

and

> now he can barely put 2 pieces together. He used to do his work so

> well at school, they were always really impressed. Now, he won't

do

> anything. Nothing motivates him whatsoever. He spends all day

> begging for tape to put on index cards or making structures out of

> things around the house. All since starting the diet...and please

> don't tell me it is withdrawal...he started this diet going on 3

> months ago now. Does anyone else know a child who has regressed

> because of the diet? I'm so frustrated. And now his doctor won't

let

> us start chelation because he said my son's liver enzymes are

> elevated. I just feel so hopeless. Now my son's father has said

he

> doesn't think he can stand it much longer and may have to leave. I

> need someone's good advice, please!

>

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Share on other sites

> I feel like my son is never going to get better. We started seeing a

> doctor who does chelation in october and he gave him a food allergy

> test. It came back with +4 reactions on a lot of things and we

> totally eliminated them from his diet. Since then, he has regressed

> extremely.

I am a non-believer in diets. Unless something could kill you for whatever

reason, then I don't think that excluding whole food groups is the answer.

Especially considering that we're talking about a child.

And why exactly you cannot chelate?

Can't you use just ALA?

And I hope you know that just because the liver enzymes are elevated, this

doesn't necessarily mean that he has liver problems. He might, or he might

not. In any case, why can't you try ALA? Are you giving milk thistle?

Valentina

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I just read also, that an elevated SGOT can be due to a high protein diet, and a

lot of people are pushing protein with our kids, so not always straightforward.

Also, milk is GOOD for the liver, methionine, lots of it, if they can take it is

actually helpful for the liver. But, I am biased toward milk, follow a

nutrtionist who has loudly proclaimed for a lot of years that milk is good. If

you can get raw milk, its the best.

[ ] Re: just one decline after another

These food reaction tests are so misleading sometimes!

Our daughter went through traditional/non-traditional allergy testing-

only 'slight' reaction to peanut. We had removed the peanut[and

others] years before because of what we saw with it. An IgG panel had

gluten and casein +1. We were told not to worry about the +1s.

Removing gluten and casein and soy has been one of the best

interventions for her. It totally controls what had been a horrible

seizure pattern that was unresponsive to medication. Have you ever

tried an elimination pattern to see what he may tolerate? We also

went through a period of elevated liver enzymes which docs attributed

to a growth spurt. I was frantic but they were right[that's their 10%

correct in our ballgame so far!] B.

>

> I feel like my son is never going to get better. We started seeing

a

> doctor who does chelation in october and he gave him a food allergy

> test. It came back with +4 reactions on a lot of things and we

> totally eliminated them from his diet. Since then, he has

regressed

> extremely. He used to be able to sit for an hour and do a puzzle

and

> now he can barely put 2 pieces together. He used to do his work so

> well at school, they were always really impressed. Now, he won't

do

> anything. Nothing motivates him whatsoever. He spends all day

> begging for tape to put on index cards or making structures out of

> things around the house. All since starting the diet...and please

> don't tell me it is withdrawal...he started this diet going on 3

> months ago now. Does anyone else know a child who has regressed

> because of the diet? I'm so frustrated. And now his doctor won't

let

> us start chelation because he said my son's liver enzymes are

> elevated. I just feel so hopeless. Now my son's father has said

he

> doesn't think he can stand it much longer and may have to leave. I

> need someone's good advice, please!

>

=======================================================

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I read that one of the enzymes that he has elevated could be the

result of growth. Why won't the doctor let me start chelation

then? He thinks my son is being exposed to pesticides...I have no

idea where those could be coming from!

> >

> > I feel like my son is never going to get better. We started

seeing

> a

> > doctor who does chelation in october and he gave him a food

allergy

> > test. It came back with +4 reactions on a lot of things and we

> > totally eliminated them from his diet. Since then, he has

> regressed

> > extremely. He used to be able to sit for an hour and do a

puzzle

> and

> > now he can barely put 2 pieces together. He used to do his work

so

> > well at school, they were always really impressed. Now, he

won't

> do

> > anything. Nothing motivates him whatsoever. He spends all day

> > begging for tape to put on index cards or making structures out

of

> > things around the house. All since starting the diet...and

please

> > don't tell me it is withdrawal...he started this diet going on 3

> > months ago now. Does anyone else know a child who has regressed

> > because of the diet? I'm so frustrated. And now his doctor

won't

> let

> > us start chelation because he said my son's liver enzymes are

> > elevated. I just feel so hopeless. Now my son's father has

said

> he

> > doesn't think he can stand it much longer and may have to

leave. I

> > need someone's good advice, please!

> >

>

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actually his protein levels were really low on the test so I don't

think it's a high protein that is causing it. i have a hard time

believing there is anything wrong though. The only thing wrong is

that the doctor won't let us start chelation and my son is losing

time that he could be getting better!

> >

> > I feel like my son is never going to get better. We started

seeing

> a

> > doctor who does chelation in october and he gave him a food

allergy

> > test. It came back with +4 reactions on a lot of things and

we

> > totally eliminated them from his diet. Since then, he has

> regressed

> > extremely. He used to be able to sit for an hour and do a

puzzle

> and

> > now he can barely put 2 pieces together. He used to do his

work so

> > well at school, they were always really impressed. Now, he

won't

> do

> > anything. Nothing motivates him whatsoever. He spends all

day

> > begging for tape to put on index cards or making structures

out of

> > things around the house. All since starting the diet...and

please

> > don't tell me it is withdrawal...he started this diet going on

3

> > months ago now. Does anyone else know a child who has

regressed

> > because of the diet? I'm so frustrated. And now his doctor

won't

> let

> > us start chelation because he said my son's liver enzymes are

> > elevated. I just feel so hopeless. Now my son's father has

said

> he

> > doesn't think he can stand it much longer and may have to

leave. I

> > need someone's good advice, please!

> >

>

>

>

>

>

>

> =======================================================

>

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Why won't the doctor let me start chelation

> then?

You could ignore him. Many of us here are chelating without a doctor.

>He thinks my son is being exposed to pesticides...I have no

> idea where those could be coming from!

Does he say which pesticides? Could he mean arsnenic from treated

decking or playground equipment? Do you live near a golf course?

Nell

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>

> I read that one of the enzymes that he has elevated could be the

> result of growth. Why won't the doctor let me start chelation

> then? He thinks my son is being exposed to pesticides...I have no

> idea where those could be coming from!

>

What liver enzymes are elevated?

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I just heard Andy say on an interview on AutismOne, he recommends ONE month on

supplements and then to get started with chelation, asap, fwiw.

[ ] Re: just one decline after another

Why won't the doctor let me start chelation

> then?

You could ignore him. Many of us here are chelating without a doctor.

>He thinks my son is being exposed to pesticides...I have no

> idea where those could be coming from!

Does he say which pesticides? Could he mean arsnenic from treated

decking or playground equipment? Do you live near a golf course?

Nell

=======================================================

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Where do I buy ALA? I have some TD-DMPS here because the doctor

already prescribed it. I could use it too. I have a 4 month

supply. I am giving milk thistle for the levels.

>

> > I feel like my son is never going to get better. We started

seeing a

> > doctor who does chelation in october and he gave him a food

allergy

> > test. It came back with +4 reactions on a lot of things and we

> > totally eliminated them from his diet. Since then, he has

regressed

> > extremely.

>

> I am a non-believer in diets. Unless something could kill you for

whatever

> reason, then I don't think that excluding whole food groups is the

answer.

> Especially considering that we're talking about a child.

>

> And why exactly you cannot chelate?

> Can't you use just ALA?

> And I hope you know that just because the liver enzymes are

elevated, this

> doesn't necessarily mean that he has liver problems. He might, or

he might

> not. In any case, why can't you try ALA? Are you giving milk

thistle?

>

>

> Valentina

>

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Nope, his reasoning is you can fool around with supplements forever trying to

get everything perfect for chelation. But chelation is what will help things get

better.

Think I have read where he said baseline blood tests are useful if there are any

problems to see if the chelation that are making things worse. Just what liver

enzyme was elevated? And do you know that is is normal for liver enzymes to be

elevated with someone who is mercury poisoned? In Andy's first book he says

either the sgot or the other one will be slightly elevated.

We did baseline blood tests and one of the liver enzymes, I believe it was sgot

was one point over the high limit.

[ ] Re: just one decline after another

He didn't suggest any kind of blood test first to check levels?

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AST (SGOT) is elevated for us and we are chelating (3.11 years old).

Nothing astronomical, but Andy said " chelate! chelate! chelate!).

Also, ALK PHOS should run between 100 and 400 for kids. The labs

often give adult ranges, which are much lower. Is that one you were

concerned about?

Anne

>

> Nope, his reasoning is you can fool around with supplements forever

trying to get everything perfect for chelation. But chelation is what

will help things get better.

>

> Think I have read where he said baseline blood tests are useful if

there are any problems to see if the chelation that are making things

worse. Just what liver enzyme was elevated? And do you know that is

is normal for liver enzymes to be elevated with someone who is

mercury poisoned? In Andy's first book he says either the sgot or the

other one will be slightly elevated.

>

> We did baseline blood tests and one of the liver enzymes, I believe

it was sgot was one point over the high limit.

>

>

> [ ] Re: just one decline after another

>

>

> He didn't suggest any kind of blood test first to check levels?

>

>

>

>

>

> =======================================================

>

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