Re: New here: ALA questions - Andy - PS

[Guest guest]

Sorry I cut the last message short - my daughter was screaming.

Also, metabolically she shows signs of lipoic acid deficiency. I

don't remember the marker, but she is deficienct in (co-something-A I

think). It is what they use since there is no way of measuring

lipoic acid in the body.

Many mito patients are on ALA. I imagine many don't know about the

heavy metal piece which is why I posted.

Our regular DAN doctor will not chelate her since medically she is so

fragile and she does not have adequate levels of cysteine? (I forget

now - seen too many doctros recently) and other factors. Her

minerals are low too. She still has not recovered from DMSA almost 2

years ago.

Is there a safer way to give the ALA for metabolic reasons?

Thank you,

Libby

> > VERY IMPORTANT!!!

> >

> > Do not use ALA for this purpose.

> >

> > Note that all heavy metal intoxications impair the ability of the

> > mitochondria to produce energy. All heavy metal intoxications

are

> > mitochondrial problems.

> >

> > Is there an identified genetic mutation, or are they just saying

> > " mitochondrial " because of failure to test for heavy metals

> properly?

> >

> > Andy . . . . ..

> >

> > > > Hi!

> > > >

> > > > Our metabolic specialist just prescribed ALA (LA) for my 3 yo

> who

> > > has

> > > > mitochondrial cytopathy (her cells do not produce energy -

> symptoms

> > > > include hypotonia and growth problems). He was unaware that

> ALA

> > > > causes yeast. I figured this is probably the best place to

> find

> > > ALA

> > > > answers.

> > > >

> > > > Is there any medical literature that shows that ALA causes

> yeast

> > > > problems that I can direct him to?

> > > sulfur feeds yeast.

> > > Detoxification itself causes yeast, not so much the chelator.

> > >

> > > >

> > > > Her dose is 50 mg two times per day.

> > > > Will this chelate mercury?

> > > I do not know.

> > >

> > > > Will this just move the mercury around?

> > > Maybe. This does not sound like a safe protocol.

> > >

> > > > Does ALA remove minerals like DMSA?

> > > That's an interesting question, I do not know.

> > >

> > > > How do I control the yeast without a prescription? (unless

> there is

> > > > medical literature which will support the yeast treatment).

> > > There are natural antifungal that do not require a prescription.

> > >

> > > > Is there anything else I need to know before starting the ALA?

> > > Yes. You need to supplement minerals and vitamins. Go see in

the

> > > files section for details.

> > >

> > > BTW, are you in the USA? If yes, ALA is available over the

> counter,

> > > you do not need a prescription.

> > >

> > >

[Guest guest]

> Sorry I cut the last message short - my daughter was screaming.

>

> Also, metabolically she shows signs of lipoic acid deficiency.

No she doesn't. She is alive. The sign of ALA deficiency is death.

> I

> don't remember the marker,

There isn't one.

> but she is deficienct in (co-something-A I think).

This is a sign of vitamin B5 (pantothenic acid) deficiency, not ALA

deficiency.

> It is what they use since there is no way of measuring

> lipoic acid in the body.

>

> Many mito patients are on ALA. I imagine many don't know about the

> heavy metal piece which is why I posted.

That is correct, and they all slowly get more and more and more and

more messed up from it (since all of them actually are heavy metal

toxic), and get to pay the doctor more and more and more for supportive

therapies. Believe me, I have heard this story MANY times.

> Our regular DAN doctor will not chelate her since medically she is so

> fragile and she does not have adequate levels of cysteine?

I guess this is one of the DAN! doctors who doesn't know anything about

medicine then. DAN! doctors, like all other doctors (and people) come

in more and less competent versions.

If cysteine is low it can be increased, usually with great relief of

symptoms, by maximizing dietary thiol intake and using REASONABLE

amounts of NAC in divided doses. 5 mg/# 3-4 times a day is the upper

limit of reasonable.

> (I forget

> now - seen too many doctros recently) and other factors. Her

> minerals are low too.

On whcih test? This is a classic sign of mercury toxicity and very

little else causes it. It doesn't get better without chelation.

> She still has not recovered from DMSA almost 2

> years ago.

On which protocol? Harmful and inappropriate protocols are usually the

problem, the agent seldom is.

> Is there a safer way to give the ALA for metabolic reasons?

Every 3 hourd day and night or not at all. That is the only safe way.

> Thank you,

>

> Libby

>

>

> > She has had a skin biospy (similar to muscle biopsy) that confirmed

> > Complex I enzyme deficiency (she has 44% enzyme activity).

This is a lot more likely toxicity than a mutation.

> She has

> > an irregular citric acid cycle and many other metabolic

> abnormalities

> > that point to mitochondrial cytopathy.

Nope. This points to heavy metal toxicity. If there is some non-toxic

problem then there is one DRAMATIC abnormality that is clearly

traceable to one enzyme. If there are a lot of abnormalities it is

toxic.

> > Additionally, she has shown

> > great improvement on the 'mitochondrial cocktail.' The only piece

> of

> > the cocktail we hadn't put in place was the ALA.

> >

> > Her metabolic dr (Mayo Clinic)

I have enough stories from people who sought help there for it to be

clear that if you don't have a clearly identifiable mainstream

condition (your daughter doesn't), then going to Mayo gets you worse

care than any other choice you can make. If you DO have a mainstream

condition they are excellent. The problem is you have to make the

diagnostic decision, they just blow off non-mainstream issues.

> > does not believe that heavy metals

> are

> > at play (hard to convince traditional doctros and this one is very

> > open minded).

Being open minded is against the rules at Mayo. Hw If it wsan't he

would already be convicned by what you have said above anyway. The

tests are alreadyc ompelling it can't be genetic, it must be acquired,

and the only known candidates for that are heavy metal toxins.

> > Giving ALA is standard treatment for kids with mito

> > problems.

And it guarantees the doctor's prognosis of slow worsening of the

disaese comes to pass, too.

> > On my own, I am chelating with PCA-Rx

PCA_Rx isn't a chelating agent, doesn't remove any heavy metals, and

doesn't improve the underlying biochemical problems of toxic people.

If you want to chelate, your choices are DMPS, DMSA and ALA. Used

properly. It doesn't matter if an important doctor tells you to do it

wrong, if you do it wrong your kid will still get lots more messed up.

If you want her better you have to chleate properly.

> > because she was not able to

> > handle chelating with DMSA. I have hair tests that show heavy

> metals

> > and a chelating urine test that doesn't show much.

This is quite typical of people with mercury problems.

> > She does have

> > mercury and aluminum circulating in her blood but not at levels

> high

> > enough for regular doctors to detect.

Again quite typical of people with mercury problems.

> > Thank you for your input.

> >

> > Libby

[Guest guest]

You know, I am not Andy, but still thinking about your situation. If you believe

ALA will help her, why not give it as a chelator according to Andy's protocol.

This would cater for both possibilities (her needing ALA or her needing

chelation) and will cause the least possible risk.

Dagmar.

[ ] Re: New here: ALA questions - Andy - PS

Sorry I cut the last message short - my daughter was screaming.

Also, metabolically she shows signs of lipoic acid deficiency. I

don't remember the marker, but she is deficienct in (co-something-A I

think). It is what they use since there is no way of measuring

lipoic acid in the body.

Many mito patients are on ALA. I imagine many don't know about the

heavy metal piece which is why I posted.

Our regular DAN doctor will not chelate her since medically she is so

fragile and she does not have adequate levels of cysteine? (I forget

now - seen too many doctros recently) and other factors. Her

minerals are low too. She still has not recovered from DMSA almost 2

years ago.

Is there a safer way to give the ALA for metabolic reasons?

Thank you,

Libby

> > VERY IMPORTANT!!!

> >

> > Do not use ALA for this purpose.

> >

> > Note that all heavy metal intoxications impair the ability of the

> > mitochondria to produce energy. All heavy metal intoxications

are

> > mitochondrial problems.

> >

> > Is there an identified genetic mutation, or are they just saying

> > " mitochondrial " because of failure to test for heavy metals

> properly?

> >

> > Andy . . . . ..

> >

> > > > Hi!

> > > >

> > > > Our metabolic specialist just prescribed ALA (LA) for my 3 yo

> who

> > > has

> > > > mitochondrial cytopathy (her cells do not produce energy -

> symptoms

> > > > include hypotonia and growth problems). He was unaware that

> ALA

> > > > causes yeast. I figured this is probably the best place to

> find

> > > ALA

> > > > answers.

> > > >

> > > > Is there any medical literature that shows that ALA causes

> yeast

> > > > problems that I can direct him to?

> > > sulfur feeds yeast.

> > > Detoxification itself causes yeast, not so much the chelator.

> > >

> > > >

> > > > Her dose is 50 mg two times per day.

> > > > Will this chelate mercury?

> > > I do not know.

> > >

> > > > Will this just move the mercury around?

> > > Maybe. This does not sound like a safe protocol.

> > >

> > > > Does ALA remove minerals like DMSA?

> > > That's an interesting question, I do not know.

> > >

> > > > How do I control the yeast without a prescription? (unless

> there is

> > > > medical literature which will support the yeast treatment).

> > > There are natural antifungal that do not require a prescription.

> > >

> > > > Is there anything else I need to know before starting the ALA?

> > > Yes. You need to supplement minerals and vitamins. Go see in

the

> > > files section for details.

> > >

> > > BTW, are you in the USA? If yes, ALA is available over the

> counter,

> > > you do not need a prescription.

> > >

> > >

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

[Guest guest]

Thank you for your input. I'll have to think hard about what to do

on the ALA. May try a few days of the every 3 hours and see what

happens.

Thanks again.

Libby

> > > She has had a skin biospy (similar to muscle biopsy) that

confirmed

> > > Complex I enzyme deficiency (she has 44% enzyme activity).

>

> This is a lot more likely toxicity than a mutation.

>

> > She has

> > > an irregular citric acid cycle and many other metabolic

> > abnormalities

> > > that point to mitochondrial cytopathy.

>

> Nope. This points to heavy metal toxicity. If there is some non-

toxic

> problem then there is one DRAMATIC abnormality that is clearly

> traceable to one enzyme. If there are a lot of abnormalities it is

> toxic.

>

> > > Additionally, she has shown

> > > great improvement on the 'mitochondrial cocktail.' The only

piece

> > of

> > > the cocktail we hadn't put in place was the ALA.

> > >

> > > Her metabolic dr (Mayo Clinic)

>

> I have enough stories from people who sought help there for it to

be

> clear that if you don't have a clearly identifiable mainstream

> condition (your daughter doesn't), then going to Mayo gets you

worse

> care than any other choice you can make. If you DO have a

mainstream

> condition they are excellent. The problem is you have to make the

> diagnostic decision, they just blow off non-mainstream issues.

>

> > > does not believe that heavy metals

> > are

> > > at play (hard to convince traditional doctros and this one is

very

> > > open minded).

>

> Being open minded is against the rules at Mayo. Hw If it wsan't he

> would already be convicned by what you have said above anyway. The

> tests are alreadyc ompelling it can't be genetic, it must be

acquired,

> and the only known candidates for that are heavy metal toxins.

>

> > > Giving ALA is standard treatment for kids with mito

> > > problems.

>

> And it guarantees the doctor's prognosis of slow worsening of the

> disaese comes to pass, too.

>

> > > On my own, I am chelating with PCA-Rx

>

> PCA_Rx isn't a chelating agent, doesn't remove any heavy metals,

and

> doesn't improve the underlying biochemical problems of toxic people.

>

> If you want to chelate, your choices are DMPS, DMSA and ALA. Used

> properly. It doesn't matter if an important doctor tells you to do

it

> wrong, if you do it wrong your kid will still get lots more messed

up.

> If you want her better you have to chleate properly.

>

> > > because she was not able to

> > > handle chelating with DMSA. I have hair tests that show heavy

> > metals

> > > and a chelating urine test that doesn't show much.

>

> This is quite typical of people with mercury problems.

>

> > > She does have

> > > mercury and aluminum circulating in her blood but not at levels

> > high

> > > enough for regular doctors to detect.

>

> Again quite typical of people with mercury problems.

>

> > > Thank you for your input.

> > >

> > > Libby