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> I started the enzymes (specifically no-fenol and peptizyde) on the

advice of a friend. He puked twice so I quit, but then read more

about it and started up again. He has been on 1 cap of each (or

less) for about a week and the stimming is even worse, the giggling

is worse, and he has invented a Whole New Stim.

Remember that there is a three-week adjustment period/die-off phase

for the enzymes. Also note that there's no real need to rush through

this and that your child may react differently than others you may

read about. We are on AFP Peptizyde, and it has taken almost two

months for me to feel confident about the dosing for my 2.5-year-old-

son. He CANNOT tolerate ANY dose on an empty stomach, and still

doesn't get even a full cap for most meals. For pizza, he definitely

needs a full cap. But no more than that.

There's also an element of " gut listening " (no pun intended!) going

on here. When we started the Zyme Prime, my son's behavior just

seemed out of the ordinary from what I'd read to expect. I believe

he was having a negative reaction to something in the ZP. When we

started the AFP, he still had behavior issues, but they felt

more " right. " If you start slowly, you can give yourself better

latitude with evaluating the reaction, I think.

Good luck.

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Guest guest

>>If I'm giving too much, do I quit for a week and start

slower, or just cut back the dose? Am I giving too little?

I would start with 1/2 capsule of ONE of the enzymes, one meal per

day, wait a week or so, then go to 1/2 capsule for two meals, then

three meals. Then add the other enzyme. Adding No-Fenol start at

about 1/8 to 1/4 capsule.

Dana

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  • 4 months later...

Blowout,

There might be studies out there, but that is not what is important. There

are hundreds of favorable testimonials on some of the web sites that deal

with Dr. 's protocols. Her ideas are way beyond fascinating, they are

honest, thoroughly researched, cures for much of what ails us today. Not

only that, some of her ideas are not her own, but come from research done

years ago that was ignored, but hold true today, where curing diseases are

concerned.

Main stream medicine is big business and your onocologist is not going to

tell you that something as simple as Dr. 's methods will work. He/she

has a vested interest in making money. Many chemo drugs cost pennies to

manufacture, are sold for hundreds of dollars to onocologists, who then

charge hundreds more to administer. Talk about taking advantage of

someone who is ill!! Your doctors are bound by the standard method of care

as detailed in the Physicians desk reference, a book written by drug and

insurance companies.

Can you answer the following questions for me? Beyond a doubt, one of the

best ways to fight disease and illness is to have a strong and healthy

immune system. Please explain why the main stream thinks that killing off

healthy immunity is going to cure cancer? Shouldn't the cure involve

building the immune system and just killing the cancer cells? Just how

many people does chemo kill? The coverup is that if you die after having

chemo, then it is the cancer that killed you. I don't think so! Too many

people have refused chemo and did a program to improve their over all

health that included getting rid of foreign invaders in the body, and their

cancers went away.

I personally know two people who were given 6 months or less to live with

their cancer. Both of them cured their cancer, just by changing their diet

to a much healthier one. They improved their health and their own immune

systems did the job it is supposed to do. Another gentleman refused chemo

for his lung cancer and was given 3 months to live. He died 7 years later

of the cancer. Never changed anything he was doing in the first place, and

he continued to smoke! I also know a few that survived chemo, but their

treatment made their quality of life unbearable and left them with other

health issues.

We humans cause most of our own ill health by the diet we ingest, and the

unhealthy air and water on this earth and the toxic chemicals we expose

ourselves to daily. I am not the healthiest person in the world, but I do

try to keep from ingesting anything that is laden with additives, and keep

my diet simple. Meat, fish, fresh veggies and fruit, and dairy. I don't

eat anything that needs to be manufactured except ice cream. I never eat

processed foods, I use water filters in my home, and I use borax and

peroxide to clean my house. Those few things will go a long way in my

attempt to stay healthy. I don't have cancer, but I damn well know that if

I did, I would turn to pioneers like Dr. and others who KNOW HOW TO

CURE CANCER, because they understand the root causes of this disease.

Dr is a researcher who has made significant discoveries that will

forever change the way smart people will prevent or cure diseases without

the help of the modern medicine man. She is as appalled as many of us that

simple and effective cures are readily available, but governments, medical

societies, and insurance companies, stand to lose all they have if people

understood how simple, at home treatments can be much more effective than

being poisoned by chemo or cut by surgeons.

Please use your search engine and do some research on the net to find

testimonials and information. Read more books that indicate there is a

cure for cancer, try some of the methods yourself, they are all harmless,

to see if they help you. If you decide to go with the recommendations of

your onocologist, that is your choice to make, but you had better be more

informed about your disease than he or she is! If you choose to handle

your disease yourself, don't expect your onocologist to be pleased to hear

that.

Funny, you question whether there have been studies of Dr. 's methods,

but have you done the same for the treatment your onocologist has

recommended? You will be horrified.

Welcome to the list. I hope one day you will be able to tell us how you

got well and rid yourself of cancer. Best of luck to you.

Aluna.

At 08:00 PM 12/11/03 +0000, you wrote:

>Hi! I'm new to the list. I joined because I read Dr. 's

>book " Cure for All Cancers " and couldn't find anyone locally who

>could answer my questions. I found Dr. 's ideas fascinating,

>but I'm still a bit skeptical - it seems too simple, especially when

>compared to the information I'm getting from my oncologist. Can

>anyone on the list point me to some studies that support Dr. 's

>theories?

>

>Thanks in advance,

>

>Blowout Bob

>

>

>

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  • 2 weeks later...

HELLO,I WOULDN'T LET THEM SWIM UNLESS THERE IS SOMEONE WITH THEM THAT KNOWS WHAT

TO DO INCASE THEY SHOULD HAVE A SEIZURE.KEPPRA, I HAD BAD LUCK WITH KEPPRA IT

MADE ME HAVE MORE SEIZURE'S AND ALSO,MAKE SURE SOMEONE IS STRONG ENOUGH BECAUSE

WHEN HAVING A SEIZURE THERE BODY BECOMES DEAD WEIGHT.ALSO MAKE SURE YOU TURN

THEM TO THEIR SIDE SO THEY WON'T CHOKE TO DEATH.AS FOR ROLLERBLADING ALWAYS MAKE

SURE SOMEONE IS THERE WITH THEM.WHAT IS YOUR CHILD'S NAME? I'LL PRAY!!!!! MOSTLY

I THINK IT'S WHEN SOMETHING BOTHER'S THEM OR STRESS WHEN PEOPLE HAVE STUPID

FIGHTS THAT WILL CAUSE STRESS AND HERE'S SOME DON'TS DON'T GIVE THEM GRAPEFRUIT

OR GRAPEFRUIT JUICE DON'T TRY FORCING THEM TO DO THINGS THAT THEY DON'T WANT TO

DO AND DON'T SMOKE AROUND THEM,DON'T GIVE THEM FLOURIDE WATER GIVE THEM

DISTILLED WATER.FLOURIDE WATER IS BAD ON THE BRAIN CELLS AND HARMFUL TO PEOPLE

WITH EPILEPSY/SEIZURES MAY GOD WATCH OVER YOUR CHILD AND PROTECT HIM/HER WHICH

EVER IT MAY BE. OH DON'T LET THEM GET TOO EXCITED OR

PLAY VIDEO GAMES FOR A LONG PERIOD OF TIME.TAKE CARE,MARK HOGUE

SI <sillouz@...> wrote:I am the mother of a teen who suffers from

autism and epilepsy.

Being non verbal , he can not communicate with me about his seizure disorder.

I have joined this list in the hope that someone could answer some of my

questions.........questions that I would ask my son , if he could answer.

Please feel free to email me privately if you so wish.

1. This first question is for those who were not or are not controlled ,

having both petit mal, partial and generalized seizures :

On days that you are having partial and absence seizures, are you able to

exercise (i.e. swim, jog, go to the gym ) ?

2. Have grand mal seizures affected your speech ?

3. Is any one was KEPPRA ? Did KEPPRA make you gain weight ?

4. Does anyone out there who is not controlled skate or rollerblade regularly ?

5. Does anyone that is mostly controlled through medications, feel that lights

or sounds can trigger seizures ?

Thanks in advance for your support and help.

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Welcome to the group! If your child is having any type of seizures, I

would make sure that someone was there to watch him if he were to go

swimming, jogging or the gym. In fact, I would make sure that someone

was always with him whether he's having seizures that day or not because

seizures are unpredictable unless they are controlled. My daughter is

language/speech impaired, but after a grand mal, her speech becomes

slurred and it's harder to understand her. I don't know anything about

keppra so this I will leave to someone who knows. For someone who is

controlled, I don't see why they couldn't skate or rollerblade. My

daughter's EEG showed that she has what is called photosensitivity to

flashing lights, which means that flashing lights, TV, video games would

trigger her grand mals, so my neuro advised us to make sure that a light

was always on whenever the TV was on and to keep her from flashing

lights. She doesn't play video games so we're OK there. I hope that I

helped some and I wish you all the best. God Bless!

Grace

> 1. This first question is for those who were not or are not

> controlled , having both petit mal, partial and generalized seizures

> :

> On days that you are having partial and absence seizures, are you

> able to exercise (i.e. swim, jog, go to the gym ) ?

>

> 2. Have grand mal seizures affected your speech ?

>

> 3. Is any one was KEPPRA ? Did KEPPRA make you gain weight ?

>

> 4. Does anyone out there who is not controlled skate or rollerblade

> regularly ?

>

> 5. Does anyone that is mostly controlled through medications, feel

> that lights or sounds can trigger seizures ?

>

> Thanks in advance for your support and help.

>

>

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Thank you Mark for your email and advice.

Question: Does sugar and chocolate trigger seizures or is that just a myth.

Re: [ ] NEW TO LIST

> HELLO,I WOULDN'T LET THEM SWIM UNLESS THERE IS SOMEONE WITH THEM THAT

KNOWS WHAT TO DO INCASE THEY SHOULD HAVE A SEIZURE.KEPPRA, I HAD BAD LUCK

WITH KEPPRA IT MADE ME HAVE MORE SEIZURE'S AND ALSO,MAKE SURE SOMEONE IS

STRONG ENOUGH BECAUSE WHEN HAVING A SEIZURE THERE BODY BECOMES DEAD

WEIGHT.ALSO MAKE SURE YOU TURN THEM TO THEIR SIDE SO THEY WON'T CHOKE TO

DEATH.AS FOR ROLLERBLADING ALWAYS MAKE SURE SOMEONE IS THERE WITH THEM.WHAT

IS YOUR CHILD'S NAME? I'LL PRAY!!!!! MOSTLY I THINK IT'S WHEN SOMETHING

BOTHER'S THEM OR STRESS WHEN PEOPLE HAVE STUPID FIGHTS THAT WILL CAUSE

STRESS AND HERE'S SOME DON'TS DON'T GIVE THEM GRAPEFRUIT OR GRAPEFRUIT JUICE

DON'T TRY FORCING THEM TO DO THINGS THAT THEY DON'T WANT TO DO AND DON'T

SMOKE AROUND THEM,DON'T GIVE THEM FLOURIDE WATER GIVE THEM DISTILLED

WATER.FLOURIDE WATER IS BAD ON THE BRAIN CELLS AND HARMFUL TO PEOPLE WITH

EPILEPSY/SEIZURES MAY GOD WATCH OVER YOUR CHILD AND PROTECT HIM/HER WHICH

EVER IT MAY BE. OH DON'T LET THEM GET TOO EXCITED OR

> PLAY VIDEO GAMES FOR A LONG PERIOD OF TIME.TAKE CARE,MARK HOGUE

>

> SI <sillouz@...> wrote:I am the mother of a teen who suffers

from autism and epilepsy.

>

> Being non verbal , he can not communicate with me about his seizure

disorder.

>

> I have joined this list in the hope that someone could answer some of my

questions.........questions that I would ask my son , if he could answer.

>

> Please feel free to email me privately if you so wish.

>

> 1. This first question is for those who were not or are not controlled ,

having both petit mal, partial and generalized seizures :

> On days that you are having partial and absence seizures, are you able to

exercise (i.e. swim, jog, go to the gym ) ?

>

> 2. Have grand mal seizures affected your speech ?

>

> 3. Is any one was KEPPRA ? Did KEPPRA make you gain weight ?

>

> 4. Does anyone out there who is not controlled skate or rollerblade

regularly ?

>

> 5. Does anyone that is mostly controlled through medications, feel that

lights or sounds can trigger seizures ?

>

> Thanks in advance for your support and help.

>

>

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also i would keep them away from cokes/soda's if you have a drink for them make

sure it doesn't contain aspertaine this is worse than sugar but,i'd limit the

sugar to as little as possible. i use to drink alot of pepsi i used to drinkthem

for my tention headaches. now,that i've been off of them i feel so much better

plus taking sunrider herbal foods has helpped alot since being on sunrider i

haven't had any seizures from jan-june i had nearly 700 seizures and since being

on sunrider i haven't had any. big improvement would you say?you know if someone

want to be well they will do anything.also don't let your child get too hot

because if they sweat too much the medicine level drops and can cause

seizures.if your child seems stressed get them some lavender and/or valerian

them are great for stress i take them everyday just to stay calm.may God watch

over all the children and place His Healing Hands upon all of them.IN HIS HOLY

NAME I PRAY.AMEN

SI <sillouz@...> wrote:Thank you Mark for your email and advice.

Question: Does sugar and chocolate trigger seizures or is that just a myth.

Re: [ ] NEW TO LIST

> HELLO,I WOULDN'T LET THEM SWIM UNLESS THERE IS SOMEONE WITH THEM THAT

KNOWS WHAT TO DO INCASE THEY SHOULD HAVE A SEIZURE.KEPPRA, I HAD BAD LUCK

WITH KEPPRA IT MADE ME HAVE MORE SEIZURE'S AND ALSO,MAKE SURE SOMEONE IS

STRONG ENOUGH BECAUSE WHEN HAVING A SEIZURE THERE BODY BECOMES DEAD

WEIGHT.ALSO MAKE SURE YOU TURN THEM TO THEIR SIDE SO THEY WON'T CHOKE TO

DEATH.AS FOR ROLLERBLADING ALWAYS MAKE SURE SOMEONE IS THERE WITH THEM.WHAT

IS YOUR CHILD'S NAME? I'LL PRAY!!!!! MOSTLY I THINK IT'S WHEN SOMETHING

BOTHER'S THEM OR STRESS WHEN PEOPLE HAVE STUPID FIGHTS THAT WILL CAUSE

STRESS AND HERE'S SOME DON'TS DON'T GIVE THEM GRAPEFRUIT OR GRAPEFRUIT JUICE

DON'T TRY FORCING THEM TO DO THINGS THAT THEY DON'T WANT TO DO AND DON'T

SMOKE AROUND THEM,DON'T GIVE THEM FLOURIDE WATER GIVE THEM DISTILLED

WATER.FLOURIDE WATER IS BAD ON THE BRAIN CELLS AND HARMFUL TO PEOPLE WITH

EPILEPSY/SEIZURES MAY GOD WATCH OVER YOUR CHILD AND PROTECT HIM/HER WHICH

EVER IT MAY BE. OH DON'T LET THEM GET TOO EXCITED OR

> PLAY VIDEO GAMES FOR A LONG PERIOD OF TIME.TAKE CARE,MARK HOGUE

>

> SI <sillouz@...> wrote:I am the mother of a teen who suffers

from autism and epilepsy.

>

> Being non verbal , he can not communicate with me about his seizure

disorder.

>

> I have joined this list in the hope that someone could answer some of my

questions.........questions that I would ask my son , if he could answer.

>

> Please feel free to email me privately if you so wish.

>

> 1. This first question is for those who were not or are not controlled ,

having both petit mal, partial and generalized seizures :

> On days that you are having partial and absence seizures, are you able to

exercise (i.e. swim, jog, go to the gym ) ?

>

> 2. Have grand mal seizures affected your speech ?

>

> 3. Is any one was KEPPRA ? Did KEPPRA make you gain weight ?

>

> 4. Does anyone out there who is not controlled skate or rollerblade

regularly ?

>

> 5. Does anyone that is mostly controlled through medications, feel that

lights or sounds can trigger seizures ?

>

> Thanks in advance for your support and help.

>

>

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  • 2 weeks later...

Barbara H <barbinlr@...> wrote:

Hi all,

Just wanted to let everyone know about my son's (11 YO) progress

with his vision problems. This is after 16 rounds of chelation.

Before he was unable to do the exercises prescribed by his

developmental optometrists. These were computer generated exercises

that required him to see 3D images. Today for the first time, he was

able to see them like everyone else is able to. This is very

exciting. I suspect that his problems with depth perception have

improved. This seems the case with his basketball playing.

This is just what I needed to convince me to keep up the chelation.

It has been very hard with the yeast issues. Before I had already

seen improvements in his bowel activity and also his energy levels. I

have now gone to 3 days on and 11 days off which seems more

manageable.

Happy New Year!! barb in little rock

Hi all,

Just wanted to introduce myself. My son Colin is 7 and is moderately autistic.

He also has the speech apraxia diagnosis. We started chelating approx. 1 year

ago very conservatively. Colin has made gains very slowly. We have just moved

from the Chicago area to Northwest Arkansas. (Bentonville) I look forward to

sharing with all of you and look forward to gaining some helpful information.

Happy New Year!! Kathy Buckley.....Colin's MOM

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

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  • 7 months later...

Hi romasweb, welcome to the group. If the RA is interfering with

your ability to live your life, why not at least investigate

medications to treat it? Do you have a rheumatologist? I

understand not wanting to take medication, but this is a progressive

disease and if yours has progressed it is not likely to stop or get

any better. Leaving it untreated for an extended period of time can

lead to more severe joint destruction. Joint destruction can be

limited or stopped with proper medication. This is important

because once you have loss of joints, there is no going back, no

cure or treatment for that. Severe joint destruction will

permenantly limit your ability to do the things you want to be able

to do.

The medications available today are nothing like what they had it

when you were younger. The side effects are not that bad and it's

very possible to have no side effects from most of the drugs. Mine

have been minor compared to my life without them, and very

managable.

Jennie

> Hi to everybody here I am new but not new to the problems of RA.

> diagnosed at the age of 4 I went cripple for months at a time,

> however in the years since I have been lucky because the attacks

> have been few and not too severe. In the last couple of years

though

> it is getting worst with more swollen joints more often. The worst

I

> find is what I have to give up doing now. I can't seem to be able

to

> sit around and watch tv all day. I like to sew, knit, crochet and

> play the piano but I can't seem to be able to do any of it now and

> that is as bad as the pain. it takes away meaning in your life I

> find anyway, I don't know how anybody else feels, I am not taking

> any meds for it and I will try to stay off them as long as

possible

> though lately it is very tempting. I am 47 now and I have

diabetes,

> I walk alot which seems to help but my arms are the worst, I would

> like to learn as much as I can about RA. I consider myself lucky

> that the attacks aren't all the time and I get times when I can do

> things I want to do. I am sure there is alot worst than I am and I

> have no right to complain.

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Hi, welcome to the list. I am new here as well. There are some medications out

now, like Vioxx, that actually do seem to help with range-of-motion and

inflammation issues. When I was a kid and got it, there was nothing really

great out there and I just had to keep taking more and more to get any sort of

relief and it tore up my insides so I had to stop. And then I stopped looking

at traditional medicine. However, I have now since tried some things including

Vioxx and Celebrex. Celebrex I didn't like at all, but Vioxx was all right

except it was extremely expensive. So I'm not on it now and can't speak about

it wearing off like everything else has for me. They are lots of other

medicines too that I see other people talking about on the list, some of which

I've tried too, but there seems to be enough discussion on that for you to get

the info you would need from here.

I can definitely relate to the loss of meaning that you talk about. Music was

how I expressed myself and how I dealt with all sorts of things and how I

received, in many ways, from others as well. When it got to the point that I

just couldn't do it anymore, I was devastated. I haven't really recovered from

that and am still looking for a new vocation.

I wouldn't worry about " a right to complain " . Pain is not a competition and all

you know about someone's pain is what they share anyway. So somebody could have

lots of conditions and things and other issues and just talk about one thing or

someone could have one thing but it affects them very strongly - it just doesn't

matter how you " stack up " . I've been in situations where with the variety of

conditions I have or for some specific condition I'm considered " the worst of

the bunch " and in others where there is somebody worse than me in one area and

I'm worse than them in another and I find it very non-constructive. It's

isolating to have to put it on a scale like that because you can either feel

unworthy to be discussing your pain or feel like you have so much that you can't

discuss it with anybody without them understanding. So what I try to do is take

each situation as it comes and talk about what I need to talk about or what

someone else needs to talk about and let all the

other people worry about categorizing if it is important to them. I'd rather

find the common ground points - of health, of pain, of healing, of whatever,

than focusing on the differences or try to one-up anybody or worry that I

shouldn't be talking.

Sorry for the ramble...going to go hide now....

BCNU

heather

romasweb <rl-hl@...> wrote:

Hi to everybody here I am new but not new to the problems of RA.

diagnosed at the age of 4 I went cripple for months at a time,

however in the years since I have been lucky because the attacks

have been few and not too severe. In the last couple of years though

it is getting worst with more swollen joints more often. The worst I

find is what I have to give up doing now. I can't seem to be able to

sit around and watch tv all day. I like to sew, knit, crochet and

play the piano but I can't seem to be able to do any of it now and

that is as bad as the pain. it takes away meaning in your life I

find anyway, I don't know how anybody else feels, I am not taking

any meds for it and I will try to stay off them as long as possible

though lately it is very tempting. I am 47 now and I have diabetes,

I walk alot which seems to help but my arms are the worst, I would

like to learn as much as I can about RA. I consider myself lucky

that the attacks aren't all the time and I get times when I can do

things I want to do. I am sure there is alot worst than I am and I

have no right to complain.

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  • 1 month later...

Hi ,

For us, the neurologist was a TOTAL waste of time, basically she told

us to live with it, do some therapy, some back half way thru 1st

grade and then evaluate to see if he needed some meds to deal with

attention issues, no thank you.. We took our son to pediatric

allergist/immunologist that speciallizes in metabolic disorders. Well

that was back in May, he ran some blood tests, (the difference here

being) he knew HOW to interpret what they meant.When our pediatrican

looked at his blood work, he said interpreting it was beyond his

knowledge base, he said I know what abnormalities mean, but over-all

imbalances, and how to treat each and the interplay one has with the

other.Allergist/immunologist put our son on some supplements and we

have not looked back. For us it put our son on his way, he now is the

top reader in 1st grade, because of his phenominal memory, can add 2

digit numbers in his head, his speech is age appropriate, and the

hypotonia is none existent, still improving. We also started the

gf/cf in May, haven't had to do the SCD because of the tremendous

improvement just doing gf/cf. If you want to e-mail me off list on

what we did I would glad to help,

Colleen

> Hi. I just discovered this list today and am very excited about

it. My 5 year old son, Zachary, was diagnosed on the mild end of

the

> autism spectrum 2 years ago. We've been on the gfcf & SCD diets

> since then and Zachary was evaluated this summer. It was

determined

> that there were no traces of autism to be found. Hooray! However,

> speech has always been his biggest issue and it still is. He has

> delays with his expressive language and with his listening

> comprehension.

>

> I just started Zachary on Carnaware yesterday and am waiting to see

> if we have any results. I am also looking into the mood-Bell

> progam. Zachary is severely allergic to fish or I would definitely

> want to try some of the EFA's.

>

> I would LOVE to hear any feedback or advice about what people have

> found to be most successful with getting their children's language

as

> normal as possible. The only evaluations we have had done have

been

> by a developmental pediatrician and SLP's. I have been wondering

> lately whether we should consider seeing a neurologist or a

metabolic

> doctor? Don't know how helpful it would be. Again, any feedback

> would be appreciated.

>

> Thanks

>

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  • 4 weeks later...

Hi Joyce

Mazzei’s Pharmacy in Eastwood (Sydney) usually carries them, but are

out of stock at the moment.

It costs less to purchase them on-line. However, if you’re wanting them

to be given at school / kindy /etc, you’ll need a pharmacy label on them

which gives the doctor’s directions on it. Mazzei’s will do this for

you.

You just have to get your doctor then to write the letter:-)

If you want more info, just email me privately

:-)

new to list

Hi there, I just joined this list today and have a question. I've

been reading about the enzymes and want to try them with my 7yr old

foster child who has severe autism.

Does anyone know if I can get them in Australia or what I would have

to do to get them shipped in from USA?

thanks,

Joyce D.

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  • 4 months later...

Welcome to the list. You're in the right place. Does you child have any

mercury amalgam dental fillings? Did your child have vaccines? Does he eat

fish? Consider getting a DDI (Doctor's Data, Inc) hair analysis (for both toxic

and essential elements) and applying the counting rules. If you can't get a

doctor to order the test, you can get it through DLS (Direct Lab Services).

The FAQs of this list are/is a good place to start.

S

<tt>

<BR>

Hello!  We have a 9.5 year old with Autism PDD-nos, Auditory <BR>

Processing disorder, and sensory issues.  We are looking <BR>

into any possible mercury connection.<BR>

<BR>

cindy<BR>

<BR>

<BR>

<BR>

</tt>

<br><br>

<tt>

=======================================================<BR>

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  • 3 weeks later...
Guest guest

Hi Nina,

Welcome to the group, but sorry that you have so many health problems.

This is a very supportive bunch of people, and a and , our

moderators, keep us educated about RA and other autoimmune diseases.

I am on Enbrel, and it's working very well to keep my RA in check. I'm

also on Bextra, which helps out a lot, too.

As I recall, one of our members applied to get Enbrel through Medicare.

Turned out that it would still be a considerable amount of money out of

his pocket, so that he still could not afford it. Maybe he'll see this

and speak up.

Let us know how it goes. Sue

On Tuesday, March 15, 2005, at 03:51 PM, Nina wrote:

>

> The doc wants to put me on Enbrel. I have applied to get Medicare to

> pay

> for it. Can't possibly afford it otherwise.

>

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Guest guest

Nina, welcome to the group. I work in Dallas and live east of

Dallas. Looking forward to getting to know you!

Jane

>

> Hello, I'm new to the group as of this morning. I was recently

diagnosed

> with RA. In addition I have Sjogren's Syndrome, Primary Biliary

Cirrhosis,

> Fibro, COPD and possibly Lupus (no positive blood test yet, though

the doc

> thinks I have it).

>

> The doc wants to put me on Enbrel. I have applied to get Medicare

to pay

> for it. Can't possibly afford it otherwise. He was thinking of

giving me

> Methotrexate, but because of the PBC (autoimmune liver disease) he

is

> concerned about the effects on my liver. Currently I take

Plaquenil,

> Prednisone and Darvocet.

>

> I am 53, married for 34 years and have one daughter. I live in

North Texas

> in the country and have many animals (9 dogs and a bunch of farm

critters).

>

> Nina

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----- Original Message -----

From: JANE

> Nina, welcome to the group. I work in Dallas and live east of

Dallas. Looking forward to getting to know you!

Thanks for the welcome! I'm abut 90 miles North of Dallas, almost in Oklahoma.

Nina

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----- Original Message -----

From: Sue

> Welcome to the group, but sorry that you have so many health problems.

This is a very supportive bunch of people, and a and , our

moderators, keep us educated about RA and other autoimmune diseases.

Thanks for the welcome! Every time I go to the rheumatologist I expect the

other shoe to drop. Seems like every time I go, they add a new diagnosis. Now

he's talking Lupus, though the tests do not show positive (yet). He's talking

" mixed connective tissue disease " since so many of my diseases overlap.

> I am on Enbrel, and it's working very well to keep my RA in check. I'm

also on Bextra, which helps out a lot, too.

I have two major problems that keep me from getting relief. One is the primary

biliary cirrhosis (autoimmune which destroys the bile ducts) and I am allergic

to NSAIDs (break me out in hives from head to foot). So my poor doctors just

stand there and scratch their heads and say they aren't sure what to do.

> As I recall, one of our members applied to get Enbrel through Medicare.

Turned out that it would still be a considerable amount of money out of

his pocket, so that he still could not afford it. Maybe he'll see this

and speak up.

My daughter has a young friend who could not get it through Medicare, but gets

it free from the manufacturer. So I have asked the Enbrel people to include an

application to get it through them, in case the Medicare doesn't pan out.

Nina

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Hi Nina,

welcome to the group, glad your here. I'm sorry about your dx, and

the difficulties your having. I hope that the Medicare comes in for

you, and they can get you on Enbrel. I have heard many good things

about Enbrel.

I live in OK, so not too far from you. I love animals too, would

have them all if I could. You take care, and know that I'm here for

you, hugs Tawny

>

> Hello, I'm new to the group as of this morning. I was recently

diagnosed

> with RA. In addition I have Sjogren's Syndrome, Primary Biliary

Cirrhosis,

> Fibro, COPD and possibly Lupus (no positive blood test yet, though

the doc

> thinks I have it).

>

> The doc wants to put me on Enbrel. I have applied to get Medicare

to pay

> for it. Can't possibly afford it otherwise. He was thinking of

giving me

> Methotrexate, but because of the PBC (autoimmune liver disease) he

is

> concerned about the effects on my liver. Currently I take

Plaquenil,

> Prednisone and Darvocet.

>

> I am 53, married for 34 years and have one daughter. I live in

North Texas

> in the country and have many animals (9 dogs and a bunch of farm

critters).

>

> Nina

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I'm glad you have a backup plan, Nina. Hope you can soon try Enbrel and

that it puts your RA in remission. Sue

On Wednesday, March 16, 2005, at 01:36 PM, Nina wrote:

>

> My daughter has a young friend who could not get it through Medicare,

> but gets it free from the manufacturer. So I have asked the Enbrel

> people to include an application to get it through them, in case the

> Medicare doesn't pan out.

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----- Original Message -----

From: Sue

> I'm glad you have a backup plan, Nina. Hope you can soon try Enbrel and

that it puts your RA in remission. Sue

When I still worked, my boss said I was like a boy scout, always prepared for

anything. LOL

Nina

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I'd certainly like to know how she got the Enbrel from the manufacturer.

I've looked for ways, but haven't found any. It would certainly be a

blessing for a few of us.

Dennis

> On Wednesday, March 16, 2005, at 01:36 PM, Nina wrote:

>>

>> My daughter has a young friend who could not get it through Medicare,

>> but gets it free from the manufacturer. So I have asked the Enbrel

>> people to include an application to get it through them, in case the

>> Medicare doesn't pan out.

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----- Original Message -----

From: Dennis W

> I'd certainly like to know how she got the Enbrel from the manufacturer.

I've looked for ways, but haven't found any. It would certainly be a

blessing for a few of us.

My doctor told me that if Medicare wouldn't pay for it, there were other ways to

get it. If it comes to that, I'll let you know what I find out. You couldn't

get Medicare to pay for yours?

Have you checked here:

http://www.needymeds.com/indices/brandname.shtml#E It lists Enbrel.

Nina

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Hi, Nina. I am new to the group, too. I have scleroderma, sjorgrens, pulmonary

hypertension. I was diagnosis about 5 years ago. I have ulcers on my fingers

and i also had to have the tip of my middle right hand finger cut off. I am 59

years old, married 40 years this year with 4 children and 5 grandchildren. Does

anyone in this group have scleroderma. Carolyn

JANE <janeatregis@...> wrote:

Nina, welcome to the group. I work in Dallas and live east of

Dallas. Looking forward to getting to know you!

Jane

>

> Hello, I'm new to the group as of this morning. I was recently

diagnosed

> with RA. In addition I have Sjogren's Syndrome, Primary Biliary

Cirrhosis,

> Fibro, COPD and possibly Lupus (no positive blood test yet, though

the doc

> thinks I have it).

>

> The doc wants to put me on Enbrel. I have applied to get Medicare

to pay

> for it. Can't possibly afford it otherwise. He was thinking of

giving me

> Methotrexate, but because of the PBC (autoimmune liver disease) he

is

> concerned about the effects on my liver. Currently I take

Plaquenil,

> Prednisone and Darvocet.

>

> I am 53, married for 34 years and have one daughter. I live in

North Texas

> in the country and have many animals (9 dogs and a bunch of farm

critters).

>

> Nina

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Welcome to the Group Deb. I just found out recently that our now two

year old son has Autism. Everyone in this group has been great, I just

joined recently as well. I Hope to get to know you and your family

better and like everyone else in this group.

Thanks

- TM

DH ; Married 5 years and Still Going Strong

Proud Parents Of:

DS; Jonathyn b/ 03-13-03 @ 37 wks Our Miracle

www.babiesonline.com/babies/j/jonathyn

DD; Kaitlyn b/s 03-21-02 @ 38 wks (Hypercoiled Cord)

Angel; M/C 01-30-01 @ 9 wks (D & C)

DD; Shirley Marie b/s 06-07-00 @ 24 wks (Hypercoiled Cord)

Mommy & Daddy, LOVES & MISSES their Girls! ^I^ ^I^

" I know God won't give me anything I can't handle

I just wish he didn't trust me so much "

-Mother

" A moment in my arms, forever in my heart "

" Always Loved and Never Forgotten "

When You Lose A Parent You Lose You Past

When You Lose A Spouse You Lose Your Present

When You Lose A Child You Lose Your Future

New to list

Hi, I'm new to the list! My son is 6 and has been SCD for 11 months.

We started Houston Enzymes 3 months into SCD and found them very

helpful, but one of my questions is the dosing, when to use them, how

much to use of them... etc... Our son is small for his age, very

small. He has a lot of medical issues, and is 28 lbs., 38 " . He has a

lot of oral sensitivities as many of our kids do, and eats purees and

soft foods mostly so it's easy to hide the enzymes in his food! We have

a lot of trouble getting protein into him. We also use Acidophillus and

SCD compliant almond yogurt. Our son has a major problem with yeast

that comes and goes. Right now he is on a course of Diflucan. I'd love

to hear any advice from others on how to help him more with this issue

too. The main reason we started SCD in the first place was severe,

chronic constipation and bloating. It was so bad he required rx

laxatives every day and still would not go for 2 weeks at a time. He is

dx with slow motility, severe reflux and delayed gastric emptying.

Thanks for any advice!

Deb

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>>Our son has a major problem with yeast

> that comes and goes. Right now he is on a course of Diflucan. I'd

love

> to hear any advice from others on how to help him more with this issue

> too. The main reason we started SCD in the first place was severe,

> chronic constipation and bloating.

Yeast ideas

http://www.danasview.net/yeast.htm

Constipation ideas

http://www.danasview.net/constip.htm

Dana

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