New to Group

[Guest guest]

In article <001601bf228e$12b33ca0$110614d1@...>, Yvan & Kathy

Trottier <kathytrottier@...> writes

>  My Rheumy started me on Minocin 100mg 2x daily- said it was normal

> protocal.  Up to Thanksgiving (In Canada) I was taking that dosage,

> but no flares, herx, etc, still the same- feeling good; better than

> summer. After reading what everyone says about taking MWF, I

> dropped dose down to 200mg MWF.  I did this because one symptom  I

> was having was more salva in my mouth and would have to swallow

> more and lips drier. I missed a couple of days without Minocin and

> then started on MWF.  That symptom went away but just starting to

> come back now.  I'm wondering if I should reduce dose to 100mg

> MWF?????????  Does anyone know????   I've been drinking more water

> and on my scripe with Minocin, label says to take

Dr Brown's protocol called for low dose antibiotics usually taken on

alternate days. And this is why many on this list take the treatment in

this fashion.

However, you have to remember that the patients referred to him often

had failed other treatments, and had had their disease for many years.

He found that they could not tolerate higher doses due to tissue

sensitivities and Herxheimer reactions.

My own preference now is for patients with *early* disease ( 1 year or

less ) is to rapidly build up the dose to 200 mg daily and stay at that

dose. In other patients who are not doing so well on, say, 200 mg x 3

per week, I tend to add Clarithromycin.

O'Dell's study does show that this dose of 200 mg per day is well

tolerated, and the results of 1/3 in complete remission off all drugs at

4 years is very impressive.

So, for you, I would suggest keeping at the 200 mg daily.

-------

Regards, Dr Graham Chiu

[Guest guest]

What are tissue sensitivities and why would they keep you from taking a higher

dose of Minocin? Deb

Dr Graham Chiu wrote:

> From: Dr Graham Chiu <anon_emouse@...>

>

> In article <001601bf228e$12b33ca0$110614d1@...>, Yvan & Kathy

> Trottier <kathytrottier@...> writes

> > My Rheumy started me on Minocin 100mg 2x daily- said it was normal

> > protocal. Up to Thanksgiving (In Canada) I was taking that dosage,

> > but no flares, herx, etc, still the same- feeling good; better than

> > summer. After reading what everyone says about taking MWF, I

> > dropped dose down to 200mg MWF. I did this because one symptom I

> > was having was more salva in my mouth and would have to swallow

> > more and lips drier. I missed a couple of days without Minocin and

> > then started on MWF. That symptom went away but just starting to

> > come back now. I'm wondering if I should reduce dose to 100mg

> > MWF????????? Does anyone know???? I've been drinking more water

> > and on my scripe with Minocin, label says to take

>

> Dr Brown's protocol called for low dose antibiotics usually taken on

> alternate days. And this is why many on this list take the treatment in

> this fashion.

>

> However, you have to remember that the patients referred to him often

> had failed other treatments, and had had their disease for many years.

> He found that they could not tolerate higher doses due to tissue

> sensitivities and Herxheimer reactions.

>

> My own preference now is for patients with *early* disease ( 1 year or

> less ) is to rapidly build up the dose to 200 mg daily and stay at that

> dose. In other patients who are not doing so well on, say, 200 mg x 3

> per week, I tend to add Clarithromycin.

>

> O'Dell's study does show that this dose of 200 mg per day is well

> tolerated, and the results of 1/3 in complete remission off all drugs at

> 4 years is very impressive.

>

> So, for you, I would suggest keeping at the 200 mg daily.

>

> -------

> Regards, Dr Graham Chiu

>

>

[Guest guest]

In a message dated 11/5/99 11:58:53 AM Eastern Standard Time, Dr. Chiu writes:

<< My own preference now is for patients with *early* disease ( 1 year or

> less ) is to rapidly build up the dose to 200 mg daily and stay at that

> dose. In other patients who are not doing so well on, say, 200 mg x 3

> per week, I tend to add Clarithromycin. >>

Dear Group and DR CHIU:

I was diagnosed with RA in 1995, but had no significant symptomatology until

Janurary of 1999. I started the Minocin in May of 1999, am at 200 mgs MWF,

but am wondering if I am theoretically " early " since I was healthy till one

year ago (with the exception of 2 or 3 minor episodes ...two times a trigger

finger and once a sore threat and tender achilles). I am responding well to

Ap therapy, with sed now about 27 and RF 161. I have tendon problems in

wrists and occasional mildly sore ankle and that's it. I don't know if I

should go up in dose to 200mgs minocin a day or not. FYI...I have a vaginal

yeast infection now (the second in 6 months) but I have eaten sugar which I

have dropped. Please let me know how to proceed with the AP protocol. My

doctor is leaving it to me and I don't know if I should do 5 days or MWF or

something else. ANy advice welcome, as I don't want to lose time!

THANK YOU IN ADVANCE>

[Guest guest]

In article <0.b6560680.2557a491@...>, SEG14@... writes

>From: SEG14@...

>

>In a message dated 11/5/99 11:58:53 AM Eastern Standard Time, Dr. Chiu writes:

>

><< My own preference now is for patients with *early* disease ( 1 year or

> > less ) is to rapidly build up the dose to 200 mg daily and stay at that

> > dose. In other patients who are not doing so well on, say, 200 mg x 3

> > per week, I tend to add Clarithromycin. >>

>Dear Group and DR CHIU:

>I was diagnosed with RA in 1995, but had no significant symptomatology until

>Janurary of 1999. I started the Minocin in May of 1999, am at 200 mgs MWF,

>but am wondering if I am theoretically " early " since I was healthy till one

>year ago (with the exception of 2 or 3 minor episodes ...two times a trigger

>finger and once a sore threat and tender achilles). I am responding well to

>Ap therapy, with sed now about 27 and RF 161. I have tendon problems in

>wrists and occasional mildly sore ankle and that's it. I don't know if I

>should go up in dose to 200mgs minocin a day or not. FYI...I have a vaginal

>yeast infection now (the second in 6 months) but I have eaten sugar which I

>have dropped. Please let me know how to proceed with the AP protocol. My

>doctor is leaving it to me and I don't know if I should do 5 days or MWF or

>something else. ANy advice welcome, as I don't want to lose time!

>THANK YOU IN ADVANCE>

>

If you haven't had many problems with the current dose, and you're still

experiencing symptoms, then my own preference would be to push the dose

to daily.

-------

Regards, Dr Graham Chiu

[Guest guest]

Hi

> I don't know what you should do, but why not start out slow, MWF, and

see if you have a herx. If not, build up to every day. A recent e-mail

from the doc said " Aim for the maximal dose " . Just be cautious of a herx.

You don't want to get discouraged too soon.

> From: SEG14@...

>Subject: Re: New to Group

>

>In a message dated 11/5/99 11:58:53 AM Eastern Standard Time, Dr. Chiu writes:

>

><< My own preference now is for patients with *early* disease ( 1 year or

> > less ) is to rapidly build up the dose to 200 mg daily and stay at that

> > dose. In other patients who are not doing so well on, say, 200 mg x 3

> > per week, I tend to add Clarithromycin. >>

>Dear Group and DR CHIU:

>I was diagnosed with RA in 1995, but had no significant symptomatology until

>Janurary of 1999. I started the Minocin in May of 1999, am at 200 mgs MWF,

>but am wondering if I am theoretically " early " since I was healthy till one

>year ago (with the exception of 2 or 3 minor episodes ...two times a trigger

>finger and once a sore threat and tender achilles). I am responding well to

>Ap therapy, with sed now about 27 and RF 161. I have tendon problems in

>wrists and occasional mildly sore ankle and that's it. I don't know if I

>should go up in dose to 200mgs minocin a day or not. FYI...I have a vaginal

>yeast infection now (the second in 6 months) but I have eaten sugar which I

>have dropped. Please let me know how to proceed with the AP protocol. My

>doctor is leaving it to me and I don't know if I should do 5 days or MWF or

>something else. ANy advice welcome, as I don't want to lose time!

>THANK YOU IN ADVANCE>

>

>

>

[Guest guest]

It is pretty common to see kids whose hair analysis looks like they

have amalgam (silver, mercury, tin) when they don't but their mom has

a lot.

Those reference ranges are a lot different than the other labs use.

Andy

> Hi:

>

> I have a 7.5 year old son whose GP hair analysis showed Mercury of

> 3.4 (range 0-2) and sliver of 19.6 range (0-1.9). Looks like when I

> had all those silver/mercury amalgams out prior to getting pregnant

> they filled my body and his with metals. I haven't read of anyone

> else's child having silver but there are a lot of posting. I'm just

> beginning to look into chelation. Do any of these chelators remove

> silver as well. Anyone experienced in chelation in the NYC area??

>

> Thanks so much..

>

> S

[Guest guest]

Yes.

In a message dated Wed, 31 Jan 2001 1:04:51 AM Eastern Standard Time,

hennesjen@... writes:

<< When you had the amalgams taken out, did the dentist put a dam over your

other teeth and a mask over your nose to prevent inhaling mercury vapors?

[Guest guest]

,

Your best bet will be to find a good DAN (defeat Autism Now ) Dr. Find

one that is familliar with oral DMSA chelation and take your son there.

If you want to find a Dr. in your area get on the web and do a search for

DAN Dr.'s and you should be able to find a list. Start making phone

calls: all DAN Dr.'s are not created equal and some of them will pooh

pooh the idea of chelation.

Best wishes<

On Sun, 04 Feb 2001 19:12:35 -0000 " Ballone " <Camp0214fb@...>

writes:

> I would appreciate any advice, help... to get me started with getting

>

> my 14 year old son tested for Mercury. I just found out about this

> topic and am amazed that I did not hear of this sooner. I live in

> Ohio, close to the PA border. If anyone can suggest a doctor in this

>

> area I would greatly appreciate it. I am looking forward to reading

> the posts and seeing if this therapy is working.

> Thanks,

>

>

>

>

[Guest guest]

Dear ,

I'd really like to write a much longer reply than I can

(I just am out of time right now, and have not gotten through

all the mail from yesterday yet )

So I'll answer the parts that I MOST want to answer, briefly:

YOU SAID:

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

A hair mineral analysis I had done a year or two ago in the UK showed

Calcium and Nickel through the roof with virtually ALL of the other

minerals through the floor. I'm not sure what that indicates but I would

be interested in getting a test done again, if possible with the US lab

recommend in 'counting rules', just to check. Is that possible from the UK

or is there a recommended UK lab that is viable to apply the counting rules

to ?

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

Well, the counting rules are BASED ON looking for how many high

and low values there are. So, if what you say is true, you

are toxic according to my understanding of the rules and the

premise. If " virtually all " elements are way high or way low

you " way qualify " as mercury toxic.

Check with DLS as to whether they can run a hair test for you

in UK (if so, it is run through DDI, which is in the counting rules.)

I'm in too much of a rush to even go find you the text about this,

but if you do a search in the archive on " Direct Lab Services "

you should find it. I post this about once every week or two.

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

>I am now very keen to start chelating as soon as possible and would

greatly appreciate any advice anyone could offer. As I mentioned, I live

in the UK and was wondering if anyone knows of any Doctor's here

specialsing in Chronic Fatigue but, more importantly, supportive of Andy's

protocol's and who would work with me on the chelation, prescribing the

DMSA, etc. Is anyone else on this list living in the UK ? Alternatively,

is there a source where I could get DMSA and ALA without a Doctor's

prescription ? Thanks in advance for any help.

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

In the US one can buy ALA at any major health food store, and

through any of the major nutritial companies by phone or by

web. It is sold as a nutritional supplement. I would think

this would be so in UK also, but let us know. DMSA is

available in US from ONLY a very few sources that are known

to me (or to this list). I also post this VERY frequently.

Search on " Vitamin Research " and you'll find the info.

I can't think of the website URL (they just changed it and

the new one is harder for me to remember.) I don't know

if these sources can sell to you in UK, but you can certainly

find out. And again, it would be great if you would post

your findings.

There is a much smaller list, also on groups,

-Biomed-UK . (I think I spelled that right!)

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

>Though I've not read many of the posts here yet (there are SO MANY!!), it

sounds like you are achieving some wonderful results with your children and

it's so great to hear!! Reading through some of the files and hearing some

of the progress being made actually had me in tears!!! But then I always

was a bit soft!! ;-)

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

I may be as soft as you? I've been moved to tears for sure---

but then, I've been reading this stuff for a year--- you may

not have " found " some of the more extreme stories of personal

achievement/progress. I find it all very remarkable.

Check the FILE called " LOVE_LETTERS " (I posted a link

to it last night.)

Okay, there well, I did answer much of what I wanted to.

Still sorry not more time to be chatty about it. Your

situation sounds very difficult. Glad you are looking into

chelation!

best,

Moria

[Guest guest]

Hello again ,

Now I have a little more time so thought I'd reread your note.

======= <you said, in part > ===================

I'm not sure what that indicates but I would be interested in getting a

test done again, if possible with the US lab recommend in 'counting rules',

just to check. Is that possible from the UK or is there a recommended UK

lab that is viable to apply the counting rules to ?

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

Did my answer yesterday make any sense? I will (this time) include

the information about Direct Lab Services. (it will be after my

name at the bottom of this.) I have asked DLS in the past if they

can do tests for people in other countries, and it depends on what

country (and maybe what test). Call or write them and see what

they say.

======== <you said, in part > ============

>I am now very keen to start chelating as soon as possible and would

greatly appreciate any advice anyone could offer. As I mentioned, I live

in the UK and was wondering if anyone knows of any Doctor's here

specialsing in Chronic Fatigue but, more importantly, supportive of Andy's

protocol's and who would work with me on the chelation, prescribing the

DMSA, etc. Is anyone else on this list living in the UK ? Alternatively,

is there a source where I could get DMSA and ALA without a Doctor's

prescription ? Thanks in advance for any help.

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

You asked for advise. My advise is that your enthusiam for

starting chelation ASAP makes sense. My further advise is that

you investigate the possibilities for buying ALA & /or DMSA on

your own, and that you consider with some care whether you would

feel comfortable proceeding without a doctor. Also consider

what functions and roles a doctor could helpfully fulfill.

And consider ALL the options for how to fulfill these functions

or roles. Since I expect you will have difficulty finding a doc who

follows Andy's guidelines, or the DAN protocol, I would advise

that you proceed in whatever way you can find that best fulfills

your desires and is comfortable for you. In my case, I am

taking ALA (since beginning of January) and no doctor. I see

an accupunturist every 2 weeks (already did that anyway), and

I dicuss the state of my liver and kidneys with her regularly,

along with everything else. (I have a really fantastic

practitioner, so we discuss many details of my health.)

I have an adult friend also chelating with ALA following Andy's

suggestions for dose/schedule, and without a doctor. She is

also doing fine. (She has more side effects than me-- also

more physical symptoms to start out with.) I also see her

every couple of weeks and we compare notes on how things are

going, which is very helpful, and probably makes me a bit

more " sane " than I would be otherwise. (It is good to have

someone else who is REALLY interested in all this to talk

to --- since most people generally think the whole topic is

rather off-the-wall.) Your mileage may vary, in fact it

probably will--- so it is best for you to decide what to

do. (But more options is very good!)

I will also include (this time) the info (which I

post very frequently) about how/where to buy DMSA (in the

US) without an Rx. These sources you can also check out --

I don't know if they can sell to you or not in UK, but it

is worth asking (if you want to take DMSA). As I said

yesterday, ALA is available freely all over in US-- I buy

mine at the health food store.

good luck!

best,

Moria

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

Direct Laboratory Services http://directlab.com provides access to testing

for professionals and consumers, and they will

order tests for you. The way they do this is they have a doctor who

requests the tests for you. They are following the normal

procedures of the labs involved. They will charge you for this service (by

marking up the prices of the tests). However, in

some cases their prices will be lower, due to volume discounts and other

pricing considerations they get from the labs. Expect

them to be helpful, and to treat you as a customer.

To order tests, call their Reno office at (877) 339-2444 or (775) 852-2170.

The person to talk to is Bassett. Which

types of tests you want run will determine what lab they run the tests

through. They expect you to prepay, and will send the

test kit(s) to your home.

a urine toxic metals and essential elements test, processed through

DDI, costs $149

a fecal test for heavy metals, through DDI, costs $139

a hair test, through DDI, costs $79.

A list of many of the tests available, and prices, can be found at:

http://healthchoice.net/lab/labtest_menu.html. " Healthchoice "

incorporates several organizations, including DLS. (see

http://healthchoice.net/aboutus/whoarewe.html).

You can also order a hair test from www.bodybalance.com. BodyBalance is a

separate division of Great Smokies Diagnostic

Laboratory. This test costs $60, plus postage. You can order a " test kit "

from their website, or by phone (888) 891-3061. The

" kit " comes with detailed instructions. It includes a legal release form

that you will need to sign. It takes about 2 weeks to get

results. The results from this test are not included in the counting rules

file, however, you can still use the results to look for

unusual high/low mineral values, and high values on other toxic metals

(besides mercury).

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

ALA can be purchased at most health food stores. It is sold as an

anti-oxidant supplement.

DMSA generally requires a prescription. You can buy DMSA without a

prescription from the sources listed below. There

may be advantages or disadvantages for you to buy it by prescription verses

over the counter. If you have insurance that may

cover it, you will want to get it with a prescription. Over the counter it

is cheaper, and you don't have to have a doctor.

Vitamin Research Products sells DMSA without a prescription. 100 mg

capsules: $40 for 45 capsules, plus about $3

for shipping. They do not sell DMSA in doses smaller than 100 mg, so,

if you need a smaller amount you'll have to

divide it yourself. Other Ingredients: Microcrystalline cellulose (a

natural plant fiber) and gelatin. Contains no added

sugar, starch, salt, wheat, gluten, corn, coloring, dairy products,

flavoring or preservatives.

Vitamin Research Products, Inc., Carson City, NV 89701 USA

(800) 877-2447 (Mon - Thurs 6 AM to 6 PM pacific time; Fri 6 AM to 5 PM)

www.vrpcentral.net

The Falls Pharmacy sells Captomer (DMSA made by Thorne Labs) without a

prescription. A bottle of 45 capsules is

$45. To order (or for more info) send email to Brock Nyberg,

Pharmacist at: getit@...

Thorne Research makes DMSA called " Captomer " . They will not sell this

to just ANYone, but they will sell it to any

licensed health care practitioner of any sort (e.g. nurse,

chiropractor, optometrist, podiatrist, pharmacist, clinical

nutritionist, homeopath, acupuncturist, etc.), who could then re-sell

it to you. (Note that the Falls Pharmacy, listed

above, sells the Thorne brand.) Their suggested RETAIL price is $43.10

for 45 capsules, 100 mg-- I don't have the

wholesale prices.

Thorne Research: (208)263-1337, located in Idaho.

Kirkman's will sell DMSA without a prescription, but they do require

verification that the user is under a doctor's

care. This verification can be phone, fax or written note from the

doctor.

We have not heard of a non-prescription source for DMPS.

[Guest guest]

> I would like to know if anybody has any info on if you can take

these enzymes with nystatin(or something similar) and if there are

any drugs/supplements/vitamins-anything at all that you should NOT

take the enzymes with? (barring of course things that one knows one's

child is sensitive to)

The proteases and cellulase enzymes work to enhance the effectiveness

of nystatin or other yeast and bacteria treatments. No bad

interaction with the others. If you are on a prescription medication,

just check with your pharmacist and/or doctor to make sure, but

usually there is not adverse interaction...except the following, but

I don't know if this is really " adverse " or not. Some of us,

including me, have found that when you start taking enzymes, the

enzymes breakdown the binders and fillers in the medications and help

them to be absorbed more. So your body is acutally taking in more

medication than it was before. So you may see more side-effects from

your body getting a higher dose than before. You are taking the same

amount but your body is digesting and absorbing more of what you

take. I ended up reducing both out medicines by 1/3 with enzymes for

the same about of results. It could also be that with enzymes,

something in our systems was " fixed " and so we just don't need that

much anymore.

You can freely mix the enzymes with all supplements that I know of

(someone else say if you know of something) except colostrum and

probiotics. For colostrum, it may contain some helpful milk protein

or something like that which the enzymes would break down. We don't

know for sure. This is a guess. So just to be on the safe side, give

colostrum and proteases seperately. The same with probiotics. There

may be an interaction and there may not be. There is disagreement on

this, so to be on the safe side, give separately. Some people said

they saw better results giving these separately and some say they

don't. So it may depend on the brand of probiotic too. Separately can

be enzymes at the beginning of the meal and probiotic at the end of

the meal, too.

[Guest guest]

> I have just joined this group after reading about Peptyzide and HN

> Zyme in Autism magazine. Our 11 year old HFA daughter seems to

crave

> carbohydrates and dairy. She will not eat vegetables and rarely

eats

> fruit. Could this kind of craving indicate an intolerance?

Yes

> She

does

> have trouble with her skin; rashes and eczema.

My kids have rashes and eczema when they eat " bad foods " without

enzymes.

> Needless to say, based on my daughter's eating patterns we have not

> been able to try GFcF diets.

I use enzymes from here, I would suggest you consider them for your

daughter.

http://www.houstonni.com/

Dana

[Guest guest]

thank you dana

[ ] Re: New to group

> I have just joined this group after reading about Peptyzide and HN

> Zyme in Autism magazine. Our 11 year old HFA daughter seems to

crave

> carbohydrates and dairy. She will not eat vegetables and rarely

eats

> fruit. Could this kind of craving indicate an intolerance?

Yes

> She

does

> have trouble with her skin; rashes and eczema.

My kids have rashes and eczema when they eat " bad foods " without

enzymes.

> Needless to say, based on my daughter's eating patterns we have not

> been able to try GFcF diets.

I use enzymes from here, I would suggest you consider them for your

daughter.

http://www.houstonni.com/

Dana

[Guest guest]

Hi Krista,

There are all kinds of autoimmune disorders that can develop with . I

don't know anyone with ITP but the abstract below mentions viruses and

immune dysfunction. There were some others that mention the herpes viruses

like HHV6, Epstein Barr, etc. the type that were involved in many of our

childrens ongoing dysfunction. Unfortunately most doctors look more at

acute infections and just assume that autoimmunity becomes self

perpetuating.

Even if a virus is not the trigger for the immune dysfunction, viruses and

other infections can take advantage of the immune dysfunction. The food

sensitivities develop when the immune system becomes overactive. They are

not always obvious. My older son had none of the obvious symptoms like my

younger one (autism spectrum), yet viruses, yeast, dietary issues were

triggering off his immune system. Besides CFS he had also developed an

autoimmune skin disorder. For two years we worked with our GP, then a

specialist. Everything they had us do was not really helping. After he was

on the protocol his skin disorder went into remission.

I would definitely try to have the bloodtests done for the workup. If

your child is like many of the kids (chronic smouldering viruses, etc.)

you want to avoid steroids if at all possible.

http://www.nids.net/labtests.htm

Dr. Goldbergs website for info in addition to .net

www.neuroimmunedr.com

I hope that you can find some answers for your son. It's hard when no one

seems to really understand what is wrong, how different problems are really

medically interconnected.

Cheryl

Blood Rev 2002 Mar;16(1):27-9 Related Articles, Books, LinkOut

Childhood immune thrombocytopenic purpura.

Nugent DJ.

Division of Hematology, Hemostasis/Thrombosis Research, Children's Hospital

of Orange County, Orange, CA

Childhood immune thrombocytopenic purpura (ITP) is acute and generally

seasonal in nature, suggesting that infectious or environmental agents may

trigger the immune response to produce platelet-reactive autoantibodies 4 to

8 weeks following an infection. In general, the patient is well apart from

the diffuse bruising and petechiae indicative of a profound

thrombocytopenia. Over a period of 6 months, the thrombocytopenia resolves

in approximately 85% of children, while the remaining 15% with persistent

platelet consumption are designated as chronic ITP patients. The peak age of

acute ITP is 2 to 5 years of age, a period when children experience the

greatest frequency of viral infections. Children with the chronic form of

ITP mirror the adult phenotype, in that females predominate, and there is no

seasonal fluctuation of the disease. Evidence from our laboratory suggests

that the activated platelet itself may play a role in perpetuating

autoantibody production and immune dysregulation associated with ITP.

Current data on lymphocyte studies and cytokine alterations noted in

response to the variety of regimens used in children with ITP suggest that

acute ITP is accompanied by autoantibodies to GPIb and a cytokine profile

that is proinflammatory in nature. Early recognition of the immune

dysregulation driving acute versus chronic ITP will distinguish those

children who might benefit from immunotherapy versus those who will recover

without therapeutic intervention. Copyright 2002, Elsevier Science Ltd. All

rights reserved.

PMID: 11913990 [PubMed - in process]

>From: " iamjoeysmom " <joemommy@...>

>Reply-

>

>Subject: new to group

>Date: Sat, 30 Mar 2002 02:49:34 -0000

>

>Hi, my name is Krista and I am new to the group, so I am not sure

>how these posts work. I have been intrigued by Dr Goldberg's work

>since I stumbled upon it a few months ago. My son (3 years

>old) is Autistic. Not so coincidentally, he was also diagnosed with

>Idiopathic Thrombocytic Purpura (ITP), an autoimmune disorder

>destroys the patient's platelets. The onset of his ITP was within a

>month or so of his developmental regression and the appearance of

>his unrelatedness and self-stimulatory behaviors (about 15 months of

>age). I have a Master's degree in Speech Pathology and have been

>working with young children for the past 10 years, so I feel

>qualified to say his development was normal until then. I am

>convinced the 2 problems are related. is being monitored by

>the Hematologist for his ITP, the only treatment he received was one

>dose of intravenous steroids during the acute phase of the disorder

>when he was at risk of hemhorraging. For now, his platelets are in

>a " safe " range, but are still below normal. Interestingly, the

>results of the standard blood work which is done at one year of age

>indicated that 's platelet count was well within a normal range

>at a year. Yet, mysteriously at 15 months, it was dangerously low,

>and the autistic behaviors appeared. I just brought him to see an

>Endocrinologist who is gathering all previous testing to determine

>what tests need to be done. I had taken to an

>allergist/immunologist, but had a bad experience with him, so I am

>pursuing the Endocrinologist instead. I didn't have any luck with

>the casein free/gluten free diet. Thankfully, is a good eater

>and doesn't seem to have any food allergies. I guess I don't have

>any specific questions, but rather was wondering what treatments are

>out there for these kids? Has anyone had similar blood disordered/

>autoimmune dysfunction that they had received treatment for with any

>success in treating the Autism as well?

>

>

>

_________________________________________________________________

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[Guest guest]

Welcome Dave,

There are a lot of great people in this group. They have helped me along

in this my first year as a member of the group.

L

davepastirik_2000 wrote:

Hi All,

I'm new to the group, I have Ankylosing Spondylitis and I have been

looking for support for a longtime. I'm glad I found this group.

Dave

To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

Hi, I think it likely that my son had bad ABA from the same place as your

client (C--------s). We are in Schoharie, NY. We transitioned to a manding

only protocol for 2 months and have gone from there. I am also a competing

EO in the home. However, I am usually in the ROOM, not upstairs. I take the

child to the therapist or he sits on my lap if he has to. Occasionally I

have had to leave the room. Especially at first. But it works. My little

guys go to a developmental integrated preschool that has a strong OT, SI

program. It is in Delanson. Call me if you want to . 518-295-7337. We

have used VB procedures for not quite one year. t Burk

[Guest guest]

How is his language? How long has he had this behavior? I just attended a

meeting with Dr. Houston himself, and he said 1 capsule per meal to start

might be best.....increase as you think is needed, but I believe no more than

2 per meal is recommended......If you have a fax machine, I could send you a

copy of a printout he gave us that would give you some good info. including

doses.

Based on this enzyme chat group, a lot of folks use 1, 2 and even all 3 of

his products.

Good luck!

[Guest guest]

yes please fax is 64 9 415 9294 this is in New Zealand - but you will be

remembered in heaven! - much appreciated

Cheers H

Re: [ ] new to group

> How is his language? How long has he had this behavior? I just attended

a

> meeting with Dr. Houston himself, and he said 1 capsule per meal to start

> might be best.....increase as you think is needed, but I believe no more

than

> 2 per meal is recommended......If you have a fax machine, I could send you

a

> copy of a printout he gave us that would give you some good info.

including

> doses.

>

> Based on this enzyme chat group, a lot of folks use 1, 2 and even all 3 of

> his products.

>

> Good luck!

>

>

>

[Guest guest]

Dear Jay,

Welcome to the other side of the " Time Warp " . Now YOU know but MILLIONS

dont. There will be those who dont want to know. Just help the ones that do.

I just wish to Hell someone had told me all this before I got pregnant. I

could have spared my daughter a lot of grief!

[ ] New to group

> Hi,

>

> I joined the group about a month ago. I have read some past posts, most

of

> Andy's files, and Andy's book so I'm somewhat up to speed.

>

> I'm a psychologist in NYC supervising homebased, ABA programs for ASD

> children. I became aware of biomedical issues such as mercury poisoning

and

> chelation through my work as some of the children I see have begun the

> various biomedical protocols. As I learned more, I began to wonder about

> many nagging physical and neurological problems I have had over the past

> 5-10 years (talk about a bear with a sore head!!).

>

> I have had a mouthful (12 teeth) with many fillings in each starting as a

> child (I'm now 43). Over the past 5 years, 6 of these teeth had broken

and

> required caps and a few root canals. A few months ago, I started the

> process of removing my amalgams.

>

> I bought Andy's book about 3 weeks ago and was chilled when I read the

> description of symptoms of mercury poisoning as I thought perhaps he knew

> me. While I knew about the exposure from my amalgams, I wasn't aware that

> mercury based preservatives were used in injectables other than vaccines.

> As a child, I received weekly allergy injections for about TEN YEARS.

> According to Andy, most of these were probably mercury preserved. So

while

> the dentist was loading my mouth with mercury, my pediatrician first and

> then an allergy specialist were injecting it in my arm. My mom helped out

> by putting mercurochrome antiseptic on all our cuts (thanks mom!!).

>

> I have always used many supplements and have refined them according to

> Andy's recommendations over the past few weeks. I have now replaced the

> amalgams in both lower quadrants and today had 2 upper caps removed and

> amalgam removed underneath. Next week, I am having the last few caps

> removed to remove the last of the amalgam, afterwhich I will begin using

> DMSA as per Andy's schedule (have a consult with my alternative doctor

next

> week where I will propose Andy's protocol which I am pretty sure he

doesn't

> use).

>

> One amazing result that I have already had with Andy's recommendations is

> for allergies. I have always had severe tree and weed (spring and fall)

> allergies and have been using a steroid nasal spray for about the last 10

> years during those seasons. I have not used it for the past 3 weeks, but

> instead added more DHEA, more GLA (borage oil), forskolin, and conjugated

> linoleic acid. Despite very high tree pollens in NYC over the past 3

weeks,

> I have virtually been symptom free which is startling.

>

> This list has been very informative and I am beginning to understand the

> need for support. Both families and friends that I have told this story

to

> have laughed it off as silliness which as you all know is very

frustrating.

> I'll be happy to make occasional progress reports as I undergo the long

> process ahead.

>

> Jay

>

>

>

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

>

[Guest guest]

> I just wish to Hell someone had told me all this before I got pregnant. I

> could have spared my daughter a lot of grief!

Amen.

Trish

[Guest guest]

Hello Jay:

Thanks for the post. Good luck with your detox.

I'm detoxing as well and also my 10 yr old son.

In Christ's love and mine...Jen : )

On Fri, 26 Apr 2002 01:02:54 -0400 " Jay Goldwein " <getinline@...>

writes:

Hi,

I joined the group about a month ago. I have read some past posts, most

of

Andy's files, and Andy's book so I'm somewhat up to speed.

I'm a psychologist in NYC supervising homebased, ABA programs for ASD

children. I became aware of biomedical issues such as mercury poisoning

and

chelation through my work as some of the children I see have begun the

various biomedical protocols. As I learned more, I began to wonder about

many nagging physical and neurological problems I have had over the past

5-10 years (talk about a bear with a sore head!!).

I have had a mouthful (12 teeth) with many fillings in each starting as a

child (I'm now 43). Over the past 5 years, 6 of these teeth had broken

and

required caps and a few root canals. A few months ago, I started the

process of removing my amalgams.

I bought Andy's book about 3 weeks ago and was chilled when I read the

description of symptoms of mercury poisoning as I thought perhaps he knew

me. While I knew about the exposure from my amalgams, I wasn't aware

that

mercury based preservatives were used in injectables other than vaccines.

As a child, I received weekly allergy injections for about TEN YEARS.

According to Andy, most of these were probably mercury preserved. So

while

the dentist was loading my mouth with mercury, my pediatrician first and

then an allergy specialist were injecting it in my arm. My mom helped

out

by putting mercurochrome antiseptic on all our cuts (thanks mom!!).

I have always used many supplements and have refined them according to

Andy's recommendations over the past few weeks. I have now replaced the

amalgams in both lower quadrants and today had 2 upper caps removed and

amalgam removed underneath. Next week, I am having the last few caps

removed to remove the last of the amalgam, afterwhich I will begin using

DMSA as per Andy's schedule (have a consult with my alternative doctor

next

week where I will propose Andy's protocol which I am pretty sure he

doesn't

use).

One amazing result that I have already had with Andy's recommendations is

for allergies. I have always had severe tree and weed (spring and fall)

allergies and have been using a steroid nasal spray for about the last 10

years during those seasons. I have not used it for the past 3 weeks, but

instead added more DHEA, more GLA (borage oil), forskolin, and conjugated

linoleic acid. Despite very high tree pollens in NYC over the past 3

weeks,

I have virtually been symptom free which is startling.

This list has been very informative and I am beginning to understand the

need for support. Both families and friends that I have told this story

to

have laughed it off as silliness which as you all know is very

frustrating.

I'll be happy to make occasional progress reports as I undergo the long

process ahead.

Jay

[Guest guest]

Hi Jay,

It is so nice to have a member of the medical profession join and understand

us.The truth is always revealed and I'm sure as time goes on many more

doctors will " cross the line " .In the meantime we as parents are against the

clock as we try to remove the toxins from our kids and so we have to rely on

each other for info. Sometimes it's hit or miss but it's ALWAYS better than

the poison they put in our children.

I too had all my amalgams removed and even though the progress has been slow

I feel ALOT BETTER!I think back to the time when my mouth was loaded with

mercury,I played with the little silver balls rolling around my bathroom

floor, and mercurochrome was slathered all over my cuts and realize that is

when I started noticing alot of strange symptoms. I thought it was due to

the fact that I was approaching puberty and my body was changing,now I know

different.Glad to hear you're feeling better.

R

[Guest guest]

Hello Jay,

>I bought Andy's book about 3 weeks ago and was chilled when I read the

>description of symptoms of mercury poisoning as I thought perhaps he knew

>me.

I felt this way too--- nice to know I'm not the only one!

>This list has been very informative and I am beginning to understand the

>need for support. Both families and friends that I have told this story to

>have laughed it off as silliness which as you all know is very frustrating.

>I'll be happy to make occasional progress reports as I undergo the long

>process ahead.

good-- that is something to look forward to

Thanks for sharing. I'm sure going through detox yourself will be

of great help for the families you work with also. Nothing like

personal experience

Moria [also in 40's and chelating myself]

[Guest guest]

| I joined the group about a month ago. I have read some past posts, most of

| Andy's files, and Andy's book so I'm somewhat up to speed.

|

| I'm a psychologist in NYC supervising homebased, ABA programs for ASD

| children. I became aware of biomedical issues such as mercury poisoning and

| chelation through my work as some of the children I see have begun the

| various biomedical protocols. As I learned more, I began to wonder about

| many nagging physical and neurological problems I have had over the past

| 5-10 years (talk about a bear with a sore head!!).

....

| I'll be happy to make occasional progress reports as I undergo the long

| process ahead.

Jay,

I'll look forward to your updates. I wonder if you are in a position to note

any effect, positive or negative, that the

biomedical interventions have on the kids you see. I ask this because I've

noticed that whenever my child makes

progress, therapists and teachers attribute it to their interventions, or they

say that she was just 'ready' for the

intervention to take hold. (And if I attribute her disabilities to toxicity and

illness, they smile patiently and

probably think I'm in denial or something). I know that as my child gets

healthier she's more able to respond to their

interventions. In all honesty, there is no way I can tease apart the theraputic

and health influences. It would be

wonderful if someone who sees this issue from both angles could comment or even

collect data of some kind on biomedical

interventions and their effects on therapy. " Mom anecdotes " aren't going to

persuade most professionals, I'm afraid.

And it pains me to think of all the children who will never benefit from

biomedical and dietary interventions.

Good luck, K.

[Guest guest]

-Welcome JoAnn! If you look to the left on your screen you will

see " files " click on that and you will find loads of info that will

probably answer your questions(and then some!) I am " just a mom " on

here and will tell you that Houston's enzymes rule and I personally

wouldn't touch any other brand because these work so well for my

daughter(she is 8 and no longer has to be gfcf.)

-- In

@y..., " joann4dk " <joann4dk@y...> wrote:

> Hello Everyone,

>

> I just joined this group in hopes of getting some help. My son,

> Dante, 4 1/2 AI, is currently on the GFCF diet for about 6 months.

I

> would say that he's about 98% GFCF -- and doing wonderfully! We

are

> also chelating him with PCA. He's already up to 6 word sentences

and

> amazing me everyday!

>

> My husband and I were thinking about checking into enzymes to see

if

> this would help him, but I have no idea where I should start my

> research. I've read that Kirkman and Houstan Labs sell them. Are

> their information good or bias? I do have a DAN doctor, but have

yet

> to discuss it with him. Thought I would check it out and had a

> little knowledge before I went to him.

>

> So any help in advance would be greatly appreciated! JoAnn