Re: Digest Number 226

[Guest guest]

Dear Andy,

I'll buy the LA -- no problem -- but shouldn't we do the hair and urine

testing to find out what exactly what heavy metals and what concentrations

are problematic? And thus, what the particular treatment should be? If not,

hey, I'll by the LA tomorrow -- just tell me how much to give a 30 pund kid.

vicky

Vicky Debold

Re: [ ] Digest Number 226

> << Andy, I respect you big time and I appreciate the hours and effort that

> you've devoted to this catastrophe. But $%# Almighty, where should we

spend

> our money? >>

>

> A big bottle of alpha lipoic acid costs $20 bucks. I am sure you can find

> some cheaper than that. Even if almost all of your money is committed to

the

> ABA program, I am sure you could come up with at least $20 to get some LA

> and see if it helps your kid.

>

> The same argument applies to a lot of other things too.

>

> Andy

>

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

> To email plain text is conventional, to add graphics is divine.

> We'll show you how at www.supersig.com.

> 1/6811/9/_/705339/_/963710399/

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

>

>

[Guest guest]

Listmates,

I want to also share the progress I think I've been fortunate to make in

my area. We are in the SF bay area, in the very large Kaiser health

system. Our pediatric gastroenterologist is the only one in the bay area

who does procedures (they only have one or two others). I saw him a week

ago. At the previous appointment I had given him the mercury poisoning

abstract and website and my son's hair and urine results, which showed

toxic levels. At this appointment I leaned on him that Kaiser should

deal with this and head up the detox effort...and he jumped in and said

yup....and Dr. ------ (a Kaiser bay area pediatrician who has 600 (that's

hundred)auties in her practice because she is their supposed 'expert'-she

has a 13 yr old autie...but she does next to nothing for anyone) should

start assessing these kids for this...and that he would figure out who

the right toxicology doc is to take charge of this and he would get in

touch with that other pediatrician, and that Kaiser could definately run

the monitoring lab work we should be doing (hepatic panel, electrolytes,

etc.). (We've been paying out of pocket for chelation so far with a

non-covered doc.)

A few months back, before the mercury poisoning paper was on the scene, I

had given him probably 20 different research studies from Wakefield,

Singh, Gupta, Cade, Waring etc.... and next time I saw him he said

roughly ' well I've read everything you've given me and some of the

references in those articles...and it looks like we've got quite a public

health problem on our hands'!

Alot of these doctors are good people who are just being manipulated by

the information that they are seeing. These clinicians in these managed

health plans are incredibly busy. If we go in with the right

information, we'll slowly change the world from the bottom up....As we

also work to change it from the top down with the right research studies.

This toxicity situation is interesting because not very many docs would

probably deny that toxicity criteria applys pretty well to our autie

population, (especially if you have the poisoning paper in-hand) and the

ability to assess for this exists at mainstream commercial labs, so the

problem can be attacked at an individual case-by-case level, proving

toxicity and then getting appropriate treatment, as we also try to

establish that it is 'the' etiology for autism....presuming this is the

correct etiology of course.

When our founding fathers formed this country they were so wise, and

appropriately concerned, to make a balance of power between the judicial,

legislative and administrative branches, and to allow free press-the

fourth check on power. It sure seems like the internet is a significant

improvement to the previous forms of communication with regards to how

well it will help 'check' corruption! Information is moving so fast!

The medical research leadership can no longer 'control' the masses be

infromation control because we can now collaborate together to reach a

much much higher understanding for so many more of us. I kind of think

the HMO clinicians are victims of this information manipulation also. We

may cure autism...from the bottom up, while our 'leadership' are still

trying to figure out what studies to run. When I read that quote from

Marie Bristol Powers a couple weeks ago, just before the ASA National

Conference about how her (finally) public acknowledgement that autism is

a genetic AND environmental disease....I had this image of a huge crowd

of people intensively marching forward and this lost 'leader' scampering

on the fringe to move back up from near the back to the front...where the

stupid 'leader' is supposed to be. ( The real leaders(Wakefields,

Singhs, Holmes, Shaws, Bradstreets, etc.) hardly even notice cause

they're so intent on their march.....To bad this lame leader has so damn

much ability to get things done...which probably won't make much

difference in the goal that the large group has....which of course is

curing autism.

Oh well! Let's keep fighting the battle! We're making progress!

Chris

On Sat, 15 Jul 2000 19:26:56 -0400 " Vicky Debold " <vdebold@...>

writes:

> Hi fellow listserve members,

>

> I met with our son's physician on Friday (for at least 30 minutes)

> and

> showed him all the " stuff " ( Binstock et al.'s materials,

> lists from

> Lynn Redwood's site,...). Clearly, he was not pleased with what I

> was

> showing him. He seemed disappointed that his specialty society had

> been

> " whitewashing " the vaccine/thimerosal/autism contraversy. He wants

> to help

> us and do whatever he can. Given that we are spending $1000 to

> $1500 a week

> (cash) on ABA I'd like to try to cut some costs on the biomedical

> stuff if

> possible.

>

> I promised our doc two things: (1) to provide him with the protocol

> for

> diagnosing and chelating mercury and whatever other heavy metals

> show up in

> Sam's hair/urine analyses (I've ordered Andy's book); and (2) to

> provide him

> with names, contact info, and phone numbers of physicians who are

> skilled in

> chelating young boys with autism for thimerosal poisoning. Our doc

> is

> really a good guy. He's spending the weekend reading the " autism:

> mercury

> poisoning paper " by Binstock and colleagues and is contacting a

> close friend

> who is a local news anchor to get the word out.

>

> Thanks everyone. If you'd like, you could e-mail me directly

> vdebold@... ). Dr Amy and Dr. Jane -- would you all be

> willing to

> have a conversation with our doc?

>

> Vicky Debold, RN, PhD

>

>

>

>

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

> Get great brand name shoes with just the click of a mouse. Check out

> the huge selection at Zappos.com, the Web's Most Popular Store!

> 1/6994/9/_/705339/_/963704228/

>

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

>

>

[Guest guest]

In a message dated 7/15/00 7:38:00 PM Eastern Daylight Time, vdebold@...

writes:

<< " whitewashing " the vaccine/thimerosal/autism controversy >>

I think that this is an accurate description of what is happening, the real

question is why is it happening? The answer to this question is not obvious

by any means, and I've been trying to develop a " contextual " understanding of

it since it affects us (all) greatly. I think Andy has grazed the target

with his comments on licensing, but if you think about how and why whitewash

is typically applied, and what gets printed in the media, I think that you

will find that your doctor and his media friend would be better off to put a

positive spin on the issue if they want it to fly. I mean, talk about the

kids who are beginning to get help, and the need to make a time line of

exposure in order to have a basis for your opinion. With amalgams you can

perhaps look in someone's mouth and count. With vaccinal thimerosal you can

count just as easily, but you need those records (which licensed

professionals do not give you unless you ask for them). Let's eliminate

confusion as well. For example did chicken pox vaccine have thimerosal?

I was recently listening to a radio news show where they talked about New

York City police officer Mac who forgave the guy that shot him

repeatedly and left him paralyzed from the neck down. Mac is actually

a big hero here in our area of New York; he came to my older kids' grammar

school and gave them great inspiration last year. What I am trying to say,

is that you can and should put a positive spin on everything. In fact this

is the best way to climb a mountain. Why did the (wo)man climb the mountain?

Maybe for therapy.

Joe Marciano

[Guest guest]

> Given that we are spending $1000 to $1500 a week (cash) on ABA ...

What is 'ABA' ? Is there a website ?

Thanks

Bill

[Guest guest]

> What is 'ABA' ? Is there a website ?

Applied behavioral analysis (discrete trial therapy) -- popularized by Ivar

Lovaas from UCLA. It is a teaching method that employs some aspects of

behavior modification to positively reinforce learning. Most of the

efficacy data are old and the sampling wasn't great but they conclude that

providing ABA-DTT 30-40 hours a week can facilitate some degree of

" recovery " from autism ( " indistinguishable from their peers " ). There are

websites and several listserves. Offhand, I don't know the URLs.

My kid needs this sort of help, however, ABA-DTT is not a cure for

thimerosal poisoning which I've come to believe is my son's underlying

problem.

vicky

[Guest guest]

Thats awesome news, especialy since we have Kaiser too! Keep us

posted on your progress with them.

Sylvia

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

>Reply- egroups

> egroups

>Subject: Re: [ ] Digest Number 226

>Date: Sat, 15 Jul 2000 22:00:06 -0700

>

>Listmates,

>I want to also share the progress I think I've been fortunate to make in

>my area. We are in the SF bay area, in the very large Kaiser health

>system. Our pediatric gastroenterologist is the only one in the bay area

>who does procedures (they only have one or two others). I saw him a week

>ago. At the previous appointment I had given him the mercury poisoning

>abstract and website and my son's hair and urine results, which showed

>toxic levels. At this appointment I leaned on him that Kaiser should

>deal with this and head up the detox effort...and he jumped in and said

>yup....and Dr. ------ (a Kaiser bay area pediatrician who has 600 (that's

>hundred)auties in her practice because she is their supposed 'expert'-she

>has a 13 yr old autie...but she does next to nothing for anyone) should

>start assessing these kids for this...and that he would figure out who

>the right toxicology doc is to take charge of this and he would get in

>touch with that other pediatrician, and that Kaiser could definately run

>the monitoring lab work we should be doing (hepatic panel, electrolytes,

>etc.). (We've been paying out of pocket for chelation so far with a

>non-covered doc.)

>A few months back, before the mercury poisoning paper was on the scene, I

>had given him probably 20 different research studies from Wakefield,

>Singh, Gupta, Cade, Waring etc.... and next time I saw him he said

>roughly ' well I've read everything you've given me and some of the

>references in those articles...and it looks like we've got quite a public

>health problem on our hands'!

>

>Alot of these doctors are good people who are just being manipulated by

>the information that they are seeing. These clinicians in these managed

>health plans are incredibly busy. If we go in with the right

>information, we'll slowly change the world from the bottom up....As we

>also work to change it from the top down with the right research studies.

> This toxicity situation is interesting because not very many docs would

>probably deny that toxicity criteria applys pretty well to our autie

>population, (especially if you have the poisoning paper in-hand) and the

>ability to assess for this exists at mainstream commercial labs, so the

>problem can be attacked at an individual case-by-case level, proving

>toxicity and then getting appropriate treatment, as we also try to

>establish that it is 'the' etiology for autism....presuming this is the

>correct etiology of course.

>

>When our founding fathers formed this country they were so wise, and

>appropriately concerned, to make a balance of power between the judicial,

>legislative and administrative branches, and to allow free press-the

>fourth check on power. It sure seems like the internet is a significant

>improvement to the previous forms of communication with regards to how

>well it will help 'check' corruption! Information is moving so fast!

>The medical research leadership can no longer 'control' the masses be

>infromation control because we can now collaborate together to reach a

>much much higher understanding for so many more of us. I kind of think

>the HMO clinicians are victims of this information manipulation also. We

>may cure autism...from the bottom up, while our 'leadership' are still

>trying to figure out what studies to run. When I read that quote from

>Marie Bristol Powers a couple weeks ago, just before the ASA National

>Conference about how her (finally) public acknowledgement that autism is

>a genetic AND environmental disease....I had this image of a huge crowd

>of people intensively marching forward and this lost 'leader' scampering

>on the fringe to move back up from near the back to the front...where the

>stupid 'leader' is supposed to be. ( The real leaders(Wakefields,

>Singhs, Holmes, Shaws, Bradstreets, etc.) hardly even notice cause

>they're so intent on their march.....To bad this lame leader has so damn

>much ability to get things done...which probably won't make much

>difference in the goal that the large group has....which of course is

>curing autism.

>

>Oh well! Let's keep fighting the battle! We're making progress!

>

>Chris

>

>

>

>

>On Sat, 15 Jul 2000 19:26:56 -0400 " Vicky Debold " <vdebold@...>

>writes:

> > Hi fellow listserve members,

> >

> > I met with our son's physician on Friday (for at least 30 minutes)

> > and

> > showed him all the " stuff " ( Binstock et al.'s materials,

> > lists from

> > Lynn Redwood's site,...). Clearly, he was not pleased with what I

> > was

> > showing him. He seemed disappointed that his specialty society had

> > been

> > " whitewashing " the vaccine/thimerosal/autism contraversy. He wants

> > to help

> > us and do whatever he can. Given that we are spending $1000 to

> > $1500 a week

> > (cash) on ABA I'd like to try to cut some costs on the biomedical

> > stuff if

> > possible.

> >

> > I promised our doc two things: (1) to provide him with the protocol

> > for

> > diagnosing and chelating mercury and whatever other heavy metals

> > show up in

> > Sam's hair/urine analyses (I've ordered Andy's book); and (2) to

> > provide him

> > with names, contact info, and phone numbers of physicians who are

> > skilled in

> > chelating young boys with autism for thimerosal poisoning. Our doc

> > is

> > really a good guy. He's spending the weekend reading the " autism:

> > mercury

> > poisoning paper " by Binstock and colleagues and is contacting a

> > close friend

> > who is a local news anchor to get the word out.

> >

> > Thanks everyone. If you'd like, you could e-mail me directly

> > vdebold@... ). Dr Amy and Dr. Jane -- would you all be

> > willing to

> > have a conversation with our doc?

> >

> > Vicky Debold, RN, PhD

> >

> >

> >

> >

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

> > Get great brand name shoes with just the click of a mouse. Check out

> > the huge selection at Zappos.com, the Web's Most Popular Store!

> > 1/6994/9/_/705339/_/963704228/

> >

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

> >

> >

[Guest guest]

In a message dated 4/7/01 3:34:05 AM Eastern Daylight Time, writes:

MEDICALERT.org

I've just read about the medalert. I had not heard of it at all. I had my first implant in Dec 96 and am due now for a replacement. I have never fired off. I read of a $35 certificate or something from the manufacturer? How do I find out about all that? I did go to the site, but saw "designer" medals for over $150. Where do you find the plain old kind without Ralph 's name on them? Should I ask my cardiologist? Or call Guidant and find out?

Or just rely on the web site I was directed to here? Theo1415@...

Have been feeling very optimistic and am even planning a trip abroad again this year. Only depressing thing is the constant battle over weight. Since my implant four plus years ago, I have put on about 20 pounds. Started with water retention. I am on some pills for that, but still have to battle bulge. I hate it. I try so very hard to watch my calories and I do, but can't seem to take it off. Any suggestions? Moderate exercise was difficult because of breathing problems. They cut back the atenelol from 2 pills last year to 1 pill then to 1/2 pill last month (the small ones). It has helped with the breathing so I think handling moderate exercise will be easier for me now.

[Guest guest]

hi,

re: medic alert tags and bracelets

try online sales@...

i bought one a stainless steel bracelet for under $20.00 and it was in my

mailbox in less than a week.

bob in pa

At 08:08 AM 04/07/2001 -0400, you wrote:

>In a message dated 4/7/01 3:34:05 AM Eastern Daylight Time,

> writes:

>

>

>>MEDICALERT.org

>

>

>I've just read about the medalert. I had not heard of it at all. I had my

>first implant in Dec 96 and am due now for a replacement. I have never fired

>off. I read of a $35 certificate or something from the manufacturer? How do

>I find out about all that? I did go to the site, but saw " designer " medals

>for over $150. Where do you find the plain old kind without Ralph 's

>name on them? Should I ask my cardiologist? Or call Guidant and find out?

>Or just rely on the web site I was directed to here? Theo1415@...

>

>Have been feeling very optimistic and am even planning a trip abroad again

>this year. Only depressing thing is the constant battle over weight. Since

>my implant four plus years ago, I have put on about 20 pounds. Started with

>water retention. I am on some pills for that, but still have to battle

>bulge. I hate it. I try so very hard to watch my calories and I do, but

>can't seem to take it off. Any suggestions? Moderate exercise was

>difficult because of breathing problems. They cut back the atenelol from 2

>pills last year to 1 pill then to 1/2 pill last month (the small ones). It

>has helped with the breathing so I think handling moderate exercise will be

>easier for me now.

>

>

>

[Guest guest]

I was the individual that mentioned recieving $35 towards

my 'bracelet... I got it in the form of an application to Med. Alert

when I was implanted, (each time)... it came from my EP's staff along

w/other paperwork that I recieved prior to leaving hsp. You should be

able to order directly from Med. Alert at the online site, or call

for information/application form, (the 800# should be on the site...

www.medicalert.org ). My first bracelet was gold tone and cost about

$35 if memory serves (k/w there is " if " ) and the second was gold

plated @ $75 only costing me $40 ... I know they have other less

expensive ones available. Personally, I'd frown upon ordering more

expensive ones as your info. may change from time to time. Of course

Med. Alert staff is very good at informing you of which info to

include on bracelet/necklace so that doesn't occur, but if you should

develope say an allergy to medication you'd want that on bracelet.

From what I can find out by speaking w/others, Ventritex, (St. Jude)

is (or was, as the case may be ... like I said... my implants

were '94 & '98.) the only company that does offer a paid bracelet (or

$35 towards a more expensive version.).

> In a message dated 4/7/01 3:34:05 AM Eastern Daylight Time,

> @y... writes:

>

>

> >

>

> I've just read about the medalert. I had not heard of it at all.

I had my

> first implant in Dec 96 and am due now for a replacement. I have

never fired

> off. I read of a $35 certificate or something from the

manufacturer? How do

> I find out about all that? I did go to the site, but

saw " designer " medals

> for over $150. Where do you find the plain old kind without Ralph

's

> name on them

[Guest guest]

i vote for medicalert-i got mine 4 yrs ago when i had x3 bypass and update

it anytime i have to by calling 1800---as has been said-i have a bracelet

plus wallet info w/ more information-it's a great peace of mind for all-i

also have the wallet card indicating icd plus it's listed on bracelet

[Guest guest]

Our son is 3.3 and has been with the same neurologist for 2 years. He has

been very good and easy to talk to, but we think we need to get another

opinion on his Apraxia. He was diagnosed with mild CP at 1, and then Apraxia

at 3, but was given a very poor prognosis for speaking. We heard that Dr.

Gold at Columbia and Dr. Aron at Mt. Sinai Hospital (both in NYC) were very

good. We also heard about Dr. Finesmith in town. (We live in Central

N.J.) We're wondering if anyone has had any experience with these

neurologists and if they are good for an Apraxic child?

Thanks,

Mom of 3.3

[Guest guest]

I noticed that a local hospital is offering a session for bariatric pts on "how to enjoy the holidays". There's a lot one could do with that topic!

Sally Hara, MS, RD, CDEPrivate PracticeKirkland, WAsallyhara@...

RD in south floridaHello everyone,I have a patient I've recently seen here in New York for an initial pre-opeval. While he is having gastric bypass in new york, he actually lives inSouth Florida (boca raton to be exact). I'm looking for a nutritionist torefer him to for pre and post-op follow up. Is there anyone in that areawho would be interested in taking on this patient? Thanks a lot, Marcus Marcus, R.D., C.D.N.Bariatric Nutrition CoordinatorCenter for Weight ManagementNorth Shore-Long Island Jewish Health System410 Lakeville Road, Suite 212New Hyde Park, New York 11042Tel (718/516) 470-4012Fax (516) 616-9061

[Guest guest]

Hey, thanks so much for all the great advice regarding Tom's ES. You guys

are awesome. We are working on putting it into practice. We've got

appointments made for the dentist to get the metal fillings out. We have

changed his diet to fruits, vegies, nuts, seeds and whole grains. He is

showing signs of detoxing just from that. Have any of you heard of

Energetic Health Equipment called QXCI, Scenar, VIBE, and Aqua Chi. Here is

a website for you to read about it. www.lachaimhealth.com We are going to

go talk to them about it today. It seems like it may be able to help Tom.

Again, thanks to Marc, and Glenn for your excellent advice and help.

Blessings,

Tom and

-- Digest Number 226

[Guest guest]

> We've got appointments made for the dentist to get the metal

> fillings out.

Hopefully this is with a holistic dentist, who will be taking

the proper precautions to prevent mercury exposure during

the removal? I've seen reports of people getting all of

their fillings taken out by a regular dentist which just

made them worse...

> changed his diet to fruits, vegies, nuts, seeds and

> whole grains. He is showing signs of detoxing just

> from that.

Great! That means he may not be that bad off. Some

people are so bad off that they don't respond to things.

Just note that if he gets too miserable from the detox,

back off or take a break. There's no good reason

to be too miserable during this process, as it's probably

going to take a while.

> QXCI, Scenar, VIBE, and Aqua Chi.

I was tested using a QXCI once, and the person said

that I was the healthiest person they'd ever tested!

However, since I still had ES, I can't imagine how

that diagnosis could have been accurate...

Also, when I suggested to eat things high in

polysaccarides, I didn't realize that this was

already a popular, proven way to recover from

chronic fatigue. These foods are called

" Glyco-Nutrients " , and are unique because they

contain " essential sugars " that ill people cannot

manufacture on their own. So, if you're not eating

some specific foods (kelp, aloe vera, oats, echinacea,

bovine cartlidge, shiitake mushroom, etc.),

then you're probably not getting these sugars.

There's a company called MannaTech which sells

a supplement called Ambrotose that contains all

8 essential sugars and has a wide range

of positive testimonials -- I'm going to try

this to see if it can be used to replace the

aloe vera juice and " Sea Energy " that I've been

consuming every day for a LONG time...

Marc

[Guest guest]

I can vouch for the QXCI and the Q2 which is a foot bath like the Aqua

Chi. I have not done the Aqua Chi.

I highly recommend the QXCI for a full diagnosis. See if you can find a

person that is either an acupuncturist or a homeopathic doctor that

uses the QXCI.

I have had 3 sessions with the Q2 and have released a lot of crap into

the water and have felt a little better, more energy, etc.

I also highly recommend raw organic colostrum and butter.

I feel for you because I too am searching and experimenting.

Toxins come in many forms; pesticides, fumes from plastic around the

computer, vaccine contaminants, radiation, on light bulbs, chemicals

released around TVs and monitors, as well as the EMF from Flourescent

lights, cell phones, towers, etc.

Homeopathic remedies are very useful once you pin point the CAUSE. QXCI

is good for finding CAUSATIVE FACTORS.

good luck!

On Nov 15, 2004, at 3:09 PM, T & S wrote:

>

> Hey, thanks so much for all the great advice regarding Tom's ES. You

> guys

> are awesome. We are working on putting it into practice. We've got

> appointments made for the dentist to get the metal fillings out. We

> have

> changed his diet to fruits, vegies, nuts, seeds and whole grains. He

> is

> showing signs of detoxing just from that. Have any of you heard of

> Energetic Health Equipment called QXCI, Scenar, VIBE, and Aqua Chi.

> Here is

> a website for you to read about it. www.lachaimhealth.com We are

> going to

> go talk to them about it today. It seems like it may be able to help

> Tom.

> Again, thanks to Marc, and Glenn for your excellent advice and

> help.

>

> Blessings,

>

> Tom and

> -- New Member

>

>

> Hi, we just discovered that my husband has ES and are trying to get

> information on what we can do for him. We've gone through all the

> garbage

> with medical doctors running every test in the book on him. Every

> one of

> them turned out negative, of course. We figured out what he had off

> of the

> internet. It was amazing to finally find a name that fit the symptoms

> that

> he has. He has worked in a clean-room manufacturing computer chips

> for nine

> years now. All of his symptoms are on the left side of his body.

> When he

> has an episode, his eye droops, his lip curls up, the left side of his

> tongue swells and makes him talk funny, the foot turns in and drags,

> and the

> hand swells and curls up. He is totally drained of energy during an

> episode and it slows down his thinking processes. His episodes can

> last

> anywhere from a few hours to three days. He can't watch t.v., work on

> the

> computer, talk on the cell phone or be around radio towers. Doing any

> of

> the above will send him into an immediate episode. The thing that made

> us

> start thinking that it was work-related is when he had an MRI done.

> While

> he was in the MRI, his face squeezed together and he felt like his

> eyeballs

> were going to pop out and his left hand curled up in a tight fist and

> he

> couldn't move it. The MRI is one big magnet. The machines he works

> around

> are the same way. They have big, powerful magnets in them. That's

> when we

> started thinking about the electromagnetic fields and their affect on

> him.

>

> We have heard that people with EHS have a high level of toxins in

> their body

> How do we get rid of them? How do you reduce your exposure to

> EMF's when

> it's all around. Any tips on how to deal with this in an effective

> way

> would be awesome.

>

>

> Tom and

>

>

>