Re: Digest Number 279

June 24, 1999

Does anyone know of any books

> that I could maybe just SUGGEST she look at that are not too " Earthy " for her

> and easy to read but will also get the point across about the correlation

> about the shots and the baby's skin condition, etc? And also his overall

> health?

> Any suggestions will be greatly appreciated!

> Kerin

Hi,

I always recommend Dr. Mendelshon's " How to Raise a Healthy Child in Spite

of your Doctor " to mainstream moms. It seems to go over better when it

comes from a real Pedeatritian. Not too much granola, if ya' know what I

mean

--

Love and Blessings,

Ocean Song

Mama to Faerin (2/92), (8/96) and Jack (9/98)

" I didn't know what God (Love) was until I became a mother. "

September 19, 1999

Hello all,

Thanks for the note about the tea tree oil. I never even thought about

putting it on my nails or psoriasis. I will give it a try. It's worth a

shot, right.

I'm a bit down tonight. First, i didn't sleep much at all last night. i on;y

took 1 elavil as I needed to be up early. I wonder if that's why. There are

many nights I only take 1. I usually have a hard time to get to sleep, but

sleep OK. Tonight I'm taking 2 even though I need to be up. And I was

feeling very little pain today. I didn't do anything too strenuous at all. I

only cleaned out my food cupboards, which simply meant taking everything

out, giving it a good wash and putting everything back in. WELL....talk

about pain tonight!! I can't get it to go away. i have rested, taken

tylenol#3, cried a little. Nothing is helping. Why? It seems so unfair that

I can't do anything different without paying for it. It doesn't seem worth

the effort, but things still need to get done. And, housecleaning...what's

that?? I don't dare even try to do it as I know what I'll feel like after.

And I can't afford a cleaner right now. Maybe after my disability starts

coming in. What do the others who suffer so badly do when it comes to

cleaning? My husband helps some, but he works too and he can't do it all.

Just needed to vent. Thanks,

September 20, 1999

I sure know what you mean about getting in such pain every time you try

to do anything. My husband has always helped, too, but he is not able

to do as much as he once did. Plus he works full time. I've had to let

a lot of things go around the house, and then try not to worry about

things not being as clean as they once were. Our daughter-in-law does

the weekly cleaning for us. They need help with money and we need help

with cleaning, so this arrangement is good. Now and then there's a week

when she can't come and we just let things go till the next week. Not

the way I prefer it, but is the way things have to be.

Marsha

September 20, 1999

..I am so sorry you are having a rough time. I understand. I went

through many months of the same thing before I finally started the Prednisone

and found some relief. I hope you and your doctor can find something that

helps you also...and in the meantime, just know you are not alone and many of

us on this list know exactly how you feel.

I remember months that I could not sleep for more than an hour or two for the

pain. Have you asked your doctor to possibly up your pain meds? What DMARDS

are you on now?

God bless,

Annette ))

September 21, 1999

,

My husband and I write little " notes in the dust " to each other.

Eventually, the cleaning will get done. It always does. I have made up

my mind that I can only do what my body tells me I can do. My hubby is

great and helps around the house. Our friends and family understand

that my house isn't immaculate like it used to be. They come to visit

us, not our house.

It took me a long time to make myself realize this.

Angera

September 22, 1999

[This message contained attachments]

January 4, 2000

I would like to remove my e-mail address from the

list serve. Can you please advise me how to do this?

Many thanks.

--- onelist wrote:

>

> ---------------------------

January 29, 2000

Hi ,

My name is , I'm from NW Indiana, I'm 32 and I've been going through a

similar situation for over 4 years now. I'm 4'2 " , I have two children ages 4

and 6. My divorce is pending on three issues my " husband " is concerned about.

I can so identify with the things you are feeling right now. I hope we can

keep in touch and maybe we can help each other though.

Be proud of the person you are, Be proud of your weight loss, try to take

stock of the people you have in your corner, rely on them, turn to them when

you need encouragement. Stay away from those who can be downers. Ok,

enough, i have a tendancy to ramble....Hope we can be friends, have a great

day, and hope to hear from you soon!!!

February 28, 2000

Kay: Please send some info if the colonic helps you feel better! I

hope so! There's a book out there of a woman's journey through getting

healed of severe candidiasis - she kept a diary and when she got well she

published it. She spoke a lot about how frequent colonics were what her

healing seemed to be hinged on. A nutritionist I saw who specialized in

treating candidiasis said that colonics is quite harmful because it washes

out the healthy colon bacteria as can too much psyllium or bentonite clay.

Just his opinion. What to do with all these opposing

opinions...aaarrrggghhh!!! LOL...JC

February 28, 2000

Regarding colonics, which i believe in, if you get constipated from the

toxins,( which you would know, ) going from 2 b.m's a day to maybe 1 every

other day & feel terrible. you need to get this flowing again. check for web

sites for colonics & a dr. Jensens book. i have my own board & do it my self.

i have done colonics for 1 week, than 1 week off. than i haven't used it till

this week when i got so sick. My Dr. also has me using castor oil for a

massage or rub it on your stomach, i tried this & was surprised it worked. i

tasted the oil a little but it helped.

For drinking always used Distilled water it helps get the toxins out. I hope

this helps someone! have a good evening! Mogdrmom

April 1, 2000

Hi , I'm Debbi. I have boy/girl twins, Eli (who has DS) and Milo.

They'll be 4 in September. I also have a son, Logan, who will be 6 in June.

Welcome to the list!!

debbi

May 10, 2000

Hi Danieta and Kathy,

I also tried to go back to work and it was so exhausting for me and I

was in quite a bit of pain at the time ( I was also on meds then too for

the pain but didn't help much) but I wanted so much to be able to keep

up my same pace but couldn't. I really have to watch what I do and how

much or I can get myself down for days at a time......so far I am doing

pretty good and I don't beat myself up anymore either for not trying to

get everything done in a short amount of time take housework for

example......there is always tomorrow if I don't get something finished.

CSCluv**

http://community.webtv.net/cat926/CATHYSCOOLCATCORNER

July 28, 2000

Hi! Our kids do seem to have an awful lot in common... Did your son have a

late onset type autism? Dean was perfectly normal -- talking in sentences,

social, etc.. until around 27months. Then we started losing him. But I

really think that between this chelation and the FGF2 therapy, we are

getting him back! He is almost potty trained now. He has just in the last

three days started holding it and using the toilet pretty much on his own.

I am truly amazed.

As far as Dean's increased stims during chelation, Amy told us to kind of

expect a little discomfort and possible change in attitude. His have not

been what I would call severe, and she hasn't mentioned lowering his dosage.

I don't think he's necessarily uncomfortable, just more wound up!! I

didn't know the suppositories were available in a 8 hour long acting

version! I am going to get my compounding pharmacist to call Dr. Amy's

pharmacist over there and get the 'recipe' .. LOL.... It would be sooooo

much easier not to have to do it so often. It only takes a minute, but with

the gf/cf diet and all the other supplements, it would be easier.

I don't know for sure how many , if any, complete recovery cases she (Dr.

Amy) knows about. I think this is all pretty new,. and even her son is

still being chelated. He has made drastic improvements, from what I have

heard though. Have you checked out her article on chelation/ and autism at

www.healing-arts.org/children/holmes.htm

It's very informative, and gives you an idea of where she's coming from .

Maranie

>Message: 13

> Date: Thu, 27 Jul 2000 17:50:06 -0700

> From: D Bogert <howard78@...>

>Subject: Re: Chelation & sleep deprivation

>

>Maranie,

>Thanks for the feedback. We just got the order called in for the

>suppositories. My son just turned 4 about 2 weeks ago, he also weighs 43

>lbs, and we also are about 3 months into chelation! Wow:)!

>

>I have been sooo conservative with my DMSA dosage. I was at 50 mg/day

>divided into 4 doses during his waking hours, I have now moved up to 75

>for the last couple of cycles. We also have been giving about 60-80

>mg/day of LA divided into the same 4 doses. We have seen gains every

>round, except when he had a bad cold, and I have yet to see any negative

>side affects. Boy, I wonder how much more gain we'll see if we up the

>dosage. I'm moving up to 100 mg/day this next cycle. I think I'll stop

>the LA until the mercury comes down. (It hasn't gone up yet. First

>result just showed high nickel and a couple others slightly elevated.

>second test is at lab now.) I was doing a 3 day on/4 day off, but moved

>about a month ago to 6 day on/8 day off to minimize the on-off

>transitions. I think I'll just start doing 1 wk on/1 wk off like you

>guys.

>

>I thought the suppositories were 8 hour ones....it sounds like your's are

>4 hours...? You said they're not timed release, but don't they take that

>period of time to be absorbed, so it would be like being timed-released?

>

>I just re-read what you wrote about your boys increased stimms,

>etc...have you considered reducing the dosage? Does he seem to be in

>discomfort?

>

>My chelation doc is not a DAN doc. He does EDTA chelation for heart

>problems mainly, but he is very open minded. Unfortunately, he doesn't

>know autism to well. I have another doc who's a semi-DAN guy who is just

>figuring out how to do chelation. A few of us have been encouraging him!

>

>Do you have any idea how many cases Dr. Holmes is aware of where the kid

>has had a complete recovery, or at least is well on their way to complete

>recovery? It sounds like her own kid, but are there very many others?

>It's so exciting to hear her optimistic prognosis, I so much want to know

>how solid her rationale is.

>

>Lets keep in touch,

>Chris

>

>On Wed, 26 Jul 2000 17:00:06 -0500 " Maranie " <adams6@...>

>writes:

>> Hi

>>

>> My son is a patient of Dr. Holmes, however, we have a wonderful

>> compounding pharmacy here in Laurel, Mississippi. We use only

>> suppositories day and night, because try as I might, I can't get

>> Dean to swallow a pill!! He is on 50 mg DMSA supp. every four

>> hours.( 300 mg / day) We haven't added the Lipoic Acid yet, as Dr.

>> Holmes is waiting on confirmation that his body burden has come down

>> low enough. I am doing a eight hour urine test today and sending it

>> off , so hopefully by the next cycle the LA will be added. The

>> suppositories are not timed release, so they have to be administered

>> every four hours. I get up and pop it in, and he never even moves!

>>

>> As far as side effects go, we aren't seeing much this time, but this

>> is his second cycle on the 7 day on 7 day off protocol. He

>> previously had 5 cycles of a 3 day on 11 day off cycle. The

>> biggest side effect we see during chelation is increased stimming

>> which consists of him grinding his teeth terribly, and slapping on

>> the wall ) He has alot of tactile seeking behaviors, that normally

>> aren't real noticeable , but when he is chelating,watch out! I can

>> definitely see improvement in him in several areas with each round

>> of chelation. His social skills have improved, and he is trying to

>> communicate more regularly.

>> We started chelation in the end of April, so I guess we are at

>> almost three months now. I am excited about adding the LA, I have

>> heard it makes the most difference. Dean will be four on AUG 5th,

>> and weighs about 43 lbs.

>>

>> Are you using a DAN doctor to oversee the chelation? Or a

>> pediatrician?

>>

>> maranie

>> -----Original Message-----

July 28, 2000

<< Does it take

AN EQUAL amount of detox misery as much as the misery heeped upon them with

the vaccines? Are they going to experience fevers and behaviors of vaccine

injury to detox it out? >>

Not unless you let an environmental medicine doctor detox them incorrectly.

If you do it right there is very little discomfort.

Andy

July 28, 2000

Something I have been thinking about, not sure if it is true. Does it take

AN EQUAL amount of detox misery as much as the misery heeped upon them with

the vaccines? Are they going to experience fevers and behaviors of vaccine

injury to detox it out?

Kathy

Re: Chelation & sleep deprivation

>>

>>Maranie,

>>Thanks for the feedback. We just got the order called in for the

>>suppositories. My son just turned 4 about 2 weeks ago, he also weighs 43

>>lbs, and we also are about 3 months into chelation! Wow:)!

>>

>>I have been sooo conservative with my DMSA dosage. I was at 50 mg/day

>>divided into 4 doses during his waking hours, I have now moved up to 75

>>for the last couple of cycles. We also have been giving about 60-80

>>mg/day of LA divided into the same 4 doses. We have seen gains every

>>round, except when he had a bad cold, and I have yet to see any negative

>>side affects. Boy, I wonder how much more gain we'll see if we up the

>>dosage. I'm moving up to 100 mg/day this next cycle. I think I'll stop

>>the LA until the mercury comes down. (It hasn't gone up yet. First

>>result just showed high nickel and a couple others slightly elevated.

>>second test is at lab now.) I was doing a 3 day on/4 day off, but moved

>>about a month ago to 6 day on/8 day off to minimize the on-off

>>transitions. I think I'll just start doing 1 wk on/1 wk off like you

>>guys.

>>

>>I thought the suppositories were 8 hour ones....it sounds like your's are

>>4 hours...? You said they're not timed release, but don't they take that

>>period of time to be absorbed, so it would be like being timed-released?

>>

>>I just re-read what you wrote about your boys increased stimms,

>>etc...have you considered reducing the dosage? Does he seem to be in

>>discomfort?

>>

>>My chelation doc is not a DAN doc. He does EDTA chelation for heart

>>problems mainly, but he is very open minded. Unfortunately, he doesn't

>>know autism to well. I have another doc who's a semi-DAN guy who is just

>>figuring out how to do chelation. A few of us have been encouraging him!

>>

>>Do you have any idea how many cases Dr. Holmes is aware of where the kid

>>has had a complete recovery, or at least is well on their way to complete

>>recovery? It sounds like her own kid, but are there very many others?

>>It's so exciting to hear her optimistic prognosis, I so much want to know

>>how solid her rationale is.

>>

>>Lets keep in touch,

>>Chris

>>

>>On Wed, 26 Jul 2000 17:00:06 -0500 " Maranie " <adams6@...>

>>writes:

>>> Hi

>>>

>>> My son is a patient of Dr. Holmes, however, we have a wonderful

>>> compounding pharmacy here in Laurel, Mississippi. We use only

>>> suppositories day and night, because try as I might, I can't get

>>> Dean to swallow a pill!! He is on 50 mg DMSA supp. every four

>>> hours.( 300 mg / day) We haven't added the Lipoic Acid yet, as Dr.

>>> Holmes is waiting on confirmation that his body burden has come down

>>> low enough. I am doing a eight hour urine test today and sending it

>>> off , so hopefully by the next cycle the LA will be added. The

>>> suppositories are not timed release, so they have to be administered

>>> every four hours. I get up and pop it in, and he never even moves!

>>>

>>> As far as side effects go, we aren't seeing much this time, but this

>>> is his second cycle on the 7 day on 7 day off protocol. He

>>> previously had 5 cycles of a 3 day on 11 day off cycle. The

>>> biggest side effect we see during chelation is increased stimming

>

>>> which consists of him grinding his teeth terribly, and slapping on

>>> the wall ) He has alot of tactile seeking behaviors, that normally

>>> aren't real noticeable , but when he is chelating,watch out! I can

>>> definitely see improvement in him in several areas with each round

>>> of chelation. His social skills have improved, and he is trying to

>>> communicate more regularly.

>>> We started chelation in the end of April, so I guess we are at

>>> almost three months now. I am excited about adding the LA, I have

>>> heard it makes the most difference. Dean will be four on AUG 5th,

>>> and weighs about 43 lbs.

>>>

>>> Are you using a DAN doctor to oversee the chelation? Or a

>>> pediatrician?

>>>

>>> maranie

>>> -----Original Message-----

>

July 28, 2000

Maranie,

My son's autism was late onset, but I think not as late as your's. He

seemed normal still at 12 months, by 18 months I was worrying because his

speech wasn't coming along very well-just a few words, and it never

developed beyond that, actually he lost the few words he had. He started

acting kind of deaf and slid from there. He's coming along slowly. He's

in pretty good shape with motor development, behaviors, cognitive, but

speechand language are hurting prety bad. He still spontaneously only

has about 10 words. In ABA he has around 30. Does moderate echolalia.

I sure am hopeful about chelation! Yes, I have read Amy's website.

Talk to you soon,

Chris

P.S. If you get tired of suppositories, I've had no problems with

dissolving the 100 mg DMSA powder in 10 oz. of distilled water, then I

mix it into his juice in his sippy cup. He pounds it right down!

On Fri, 28 Jul 2000 09:40:10 -0500 " Maranie " <adams6@...>

writes:

>

> Hi! Our kids do seem to have an awful lot in common... Did your son

> have a

> late onset type autism? Dean was perfectly normal -- talking in

> sentences,

> social, etc.. until around 27months. Then we started losing him.

> But I

> really think that between this chelation and the FGF2 therapy, we

> are

> getting him back! He is almost potty trained now. He has just in

> the last

> three days started holding it and using the toilet pretty much on

> his own.

> I am truly amazed.

>

> As far as Dean's increased stims during chelation, Amy told us to

> kind of

> expect a little discomfort and possible change in attitude. His

> have not

> been what I would call severe, and she hasn't mentioned lowering his

> dosage.

> I don't think he's necessarily uncomfortable, just more wound up!!

> I

> didn't know the suppositories were available in a 8 hour long acting

> version! I am going to get my compounding pharmacist to call Dr.

> Amy's

> pharmacist over there and get the 'recipe' .. LOL.... It would be

> sooooo

> much easier not to have to do it so often. It only takes a minute,

> but with

> the gf/cf diet and all the other supplements, it would be easier.

>

> I don't know for sure how many , if any, complete recovery cases she

> (Dr.

> Amy) knows about. I think this is all pretty new,. and even her son

> is

> still being chelated. He has made drastic improvements, from what I

> have

> heard though. Have you checked out her article on chelation/ and

> autism at

> www.healing-arts.org/children/holmes.htm

> It's very informative, and gives you an idea of where she's coming

> from .

>

> Maranie

> >Message: 13

> > Date: Thu, 27 Jul 2000 17:50:06 -0700

> > From: D Bogert <howard78@...>

> >Subject: Re: Chelation & sleep deprivation

> >

> >Maranie,

> >Thanks for the feedback. We just got the order called in for the

> >suppositories. My son just turned 4 about 2 weeks ago, he also

> weighs 43

> >lbs, and we also are about 3 months into chelation! Wow:)!

> >

> >I have been sooo conservative with my DMSA dosage. I was at 50

> mg/day

> >divided into 4 doses during his waking hours, I have now moved up

> to 75

> >for the last couple of cycles. We also have been giving about

> 60-80

> >mg/day of LA divided into the same 4 doses. We have seen gains

> every

> >round, except when he had a bad cold, and I have yet to see any

> negative

> >side affects. Boy, I wonder how much more gain we'll see if we up

> the

> >dosage. I'm moving up to 100 mg/day this next cycle. I think I'll

> stop

> >the LA until the mercury comes down. (It hasn't gone up yet.

> First

> >result just showed high nickel and a couple others slightly

> elevated.

> >second test is at lab now.) I was doing a 3 day on/4 day off, but

> moved

> >about a month ago to 6 day on/8 day off to minimize the on-off

> >transitions. I think I'll just start doing 1 wk on/1 wk off like

> you

> >guys.

> >

> >I thought the suppositories were 8 hour ones....it sounds like

> your's are

> >4 hours...? You said they're not timed release, but don't they

> take that

> >period of time to be absorbed, so it would be like being

> timed-released?

> >

> >I just re-read what you wrote about your boys increased stimms,

> >etc...have you considered reducing the dosage? Does he seem to be

> in

> >discomfort?

> >

> >My chelation doc is not a DAN doc. He does EDTA chelation for

> heart

> >problems mainly, but he is very open minded. Unfortunately, he

> doesn't

> >know autism to well. I have another doc who's a semi-DAN guy who

> is just

> >figuring out how to do chelation. A few of us have been

> encouraging him!

> >

> >Do you have any idea how many cases Dr. Holmes is aware of where

> the kid

> >has had a complete recovery, or at least is well on their way to

> complete

> >recovery? It sounds like her own kid, but are there very many

> others?

> >It's so exciting to hear her optimistic prognosis, I so much want

> to know

> >how solid her rationale is.

> >

> >Lets keep in touch,

> >Chris

> >

> >On Wed, 26 Jul 2000 17:00:06 -0500 " Maranie "

> <adams6@...>

> >writes:

> >> Hi

> >>

> >> My son is a patient of Dr. Holmes, however, we have a wonderful

> >> compounding pharmacy here in Laurel, Mississippi. We use only

> >> suppositories day and night, because try as I might, I can't get

> >> Dean to swallow a pill!! He is on 50 mg DMSA supp. every four

> >> hours.( 300 mg / day) We haven't added the Lipoic Acid yet, as

> Dr.

> >> Holmes is waiting on confirmation that his body burden has come

> down

> >> low enough. I am doing a eight hour urine test today and sending

> it

> >> off , so hopefully by the next cycle the LA will be added. The

> >> suppositories are not timed release, so they have to be

> administered

> >> every four hours. I get up and pop it in, and he never even

> moves!

> >>

> >> As far as side effects go, we aren't seeing much this time, but

> this

> >> is his second cycle on the 7 day on 7 day off protocol. He

> >> previously had 5 cycles of a 3 day on 11 day off cycle. The

> >> biggest side effect we see during chelation is increased stimming

>

> >> which consists of him grinding his teeth terribly, and slapping

> on

> >> the wall ) He has alot of tactile seeking behaviors, that

> normally

> >> aren't real noticeable , but when he is chelating,watch out! I

> can

> >> definitely see improvement in him in several areas with each

> round

> >> of chelation. His social skills have improved, and he is trying

> to

> >> communicate more regularly.

> >> We started chelation in the end of April, so I guess we are at

> >> almost three months now. I am excited about adding the LA, I

> have

> >> heard it makes the most difference. Dean will be four on AUG

> 5th,

> >> and weighs about 43 lbs.

> >>

> >> Are you using a DAN doctor to oversee the chelation? Or a

> >> pediatrician?

> >>

> >> maranie

> >> -----Original Message-----

>

September 6, 2000

Hello Beth:

Yes, while I was on combo I had something like that, it was because of

having very, very dry skin, and it the only thing that helped was a good skin

lotion, not sure it will help you, but shouldn't hurt to give it a try.

Take care,

Les

September 6, 2000

Hi,

I have just finished 4 months of combo. This is my second time around. I

relapsed after the first time. I wish all the people who are just starting

treatment good luck and not to be too afraid as each person reacts

differently. I have been feeling fine. Haven't missed any work. Not

taking any medication other than the combo and Tylenol.

My question is that the last time on treatment I had a rash all over my

torso which has not happened this time but I do have a very weird thing

happening on my eyelids. This has been going on for over a month, hasn't

spread anywhere other than the eyelids. It is itchy and my eyelids are

swollen and it looks like I am wearing red eyeshadow. My eyes don't seem to

be affected just the eyelids. I had an appointment scheduled for next week

with my hepatologist which was cancelled by her office until October 19th.

I am going to go see my primary care and see if he can figure out what it is

but I was wondering if anyone in the group has had a reaction like this that

was attributed to the combo?

Thanks for your help.

Beth

September 6, 2000