Re: question from a skeptic

[Guest guest]

,

You raise some excellent questions.

I think ultimately we all want to give our children the best " shot "

they can have at achieving a normal life.

While, as you note, there are many options out there, eventually one

has to decide what they think they believe and stick with that for a

while.

It's impossible to jump from one school of thought to another, to

another, to another.

, for us, was an easy choice because it made so much more sense

and because it seemed to address so many of the unanswered questions

about our son's history.

The first four months he was on the protocol it was easy to maintain

our belief in because our sone did amazingly well before our

very eyes. The last four months have been a bit more of a struggle

but we remain optimistic over the long term, prepared that this

wasn't going to be a straight-forward process.

It's not easy to negotiate through a maze trying to hold onto beleifs

while keeping an open mind to new ones.

Ultimately, only you know your child best and your gut instincts

about him are what count.

Your points about Lovaas ABA are well taken, although Dr. Goldberg is

actually not much of a proponent of it himself.

That said, many parents on this list have had success doing ABA with

their children and, as with versus other medical approaches, it

comes down to the parents instinct about what is best for their child.

The idea to which we all subscribe is that with a brain that is

working better, the child will achieve more whether it is through

ABA, Floortime, Sonrise, Sensory integration ... or whatever

approach you think best suits your child.

Dave

--- In , " Eland, R " <david.r.eland@m...>

wrote:

> I have a 6 yo with severe autism. I have been following this list

for

> several weeks. Initially I was very interested but, with respect,

I have to

> say I find myself growing more and more skeptical. The theory

behind

> is fascinating with many parents reporting improvements. But the

same could

> be said for Chealation, enzymes & other supplements, secretin, AIT,

Sensory

> Integration, etc. Each of these has a devoted group of supporters

with

> their own email lists. Many can show you narrow scientific studies

that seem

> to support their " theory " of autism. However, these theories are

not

> supported by controlled outcome based studies of children with

autism.

>

> In my opinion, the gold-standard in Autism is still the UCLA ABA

studies

> done by Lovaas. ABA is a non-medical, behavioral based approach to

autism.

> The results: the average IQ increased by 20 points and more than

40% of the

> children improved to the point that that autism professionals could

not

> distinguish them from neuro-typical peers. Follow up studies done

years

> later show the effects were lasting. Are there controlled studies

for

> children with autism that have been on the protocol?

>

> It sounds like many on this list also have ABA programs. How can

you know

> what progress comes from ABA and what from the medications?

> Anti-depressants directly affect the brain. Do you wonder if your

ABA

> program might show more progress if your child was not on the

medications?

> If protocol plus ABA is superior to ABA alone, then a higher

> percentage of the children doing both should achieve the results

that Lovaas

> showed or they should achieve those results in shorter time. Is

there any

> study that shows this?

>

> Also, if autism is an immune system disorder, how was it that a

behavioral

> based approach was so successful? And given the proven

effectiveness of

> intensive ABA therapy, why doesn't the protocol stress this be

started

> as soon as possible?

>

> Respectfully,

>

> Eland

[Guest guest]

:

I have not been active on this list recently but your note caught my

attention. I agree that the protocol has not yet been subjected to

scientific study and I have been involved in trying to secure the funds to do

so for several years (even though my eleven year old son has only marginally

responded to any intervention we have tried). I completely agree, and look

forward to, controlled studies on the front. However, I need to be

educated on all of these double blind, highly controlled ABA studies that

support the original Lovaas study.

Although the general sentiment out there is that ABA is the only " proven

effective " therapy for our kids, I still scratch my head when I hear it. I

see myriad anecdotal or small studies conducted by ABA centers who have an

interest in the results, but I have not yet seen the proof for ABA that you

are looking for with . Again, I am very disappointed at how little

formal research has been published on , but I do want to caution parents

with younger kids that NO therapy is proven effective for every child on the

autism spectrum. ABA has its niche, but the best ABA centers in the country

have not been able to touch some kids. I will always have questions about

the Lovaas study design (sample selection, testing methods, etc.) and will

continue to challenge ABA as the only " proven effective therapy " for kids

with autism until it is actually proven.

Bottom line - I think every therapy available, including ABA, should be

subject to the same sceintific standards and clinical trials. To date, that

has not occurred at all (except for the clinical trials with secretin - even

though there may be questions there as well). If you have independent,

scientific evidence of ABA's effectiveness, please forward it to me.

Just my thoughts on the topic. Be careful about using ABA on a solo basis,

particularly if your son needs alot of help (like mine).

[Guest guest]

Hi ,

Hopefully there will be others who will be able to fill in more blanks for you

than I can. There have not been controlled studies *as yet* of children who are

specifically on the protocol. But funding for empirical studies is in the

works.

If you haven't yet, I recommend visiting www.nids.net , where you will find

scores of peer-reviewed, controlled-outcome studies which provide very

compelling scientific support for the hypothesis. In addition, if you

click the link to Dr. Goldberg's website, www.neuroimmunedr.com, and click on

the " conference " area, you can research just about any question you may have in

this area.

ABA can indeed be very effective (although Dr. Goldberg isn't a fan; he prefers

Greenspan's Floortime model to ABA), but it's *behavioral*. Children who are

ill - and asserts (and has ample evidence to prove) that these children are

ill, not disordered - can't learn and behave badly. Our family's experience:

the protocol has meant the difference between a child who had chronic

diarrhea; frequent colds, ear and throat infections (as often as every 3 weeks);

who was often either listless and spacey or hyperactive; who picked at the skin

on his hands until they bled; had dark circles under his eyes; couldn't swing or

ride a bike, was obsessed with mom and was very resistive to behavior

intervention, and a child who is vibrant, alert, funny, curious, friendly,

athletic, and independent. has meant that he's much more responsive to

intervention therapy - this is now a kid who's eager to do the work he needs to

do to catch up with his peers.

Just wanted to share my own story. Each child is different.

Donna

[Guest guest]

~~

The proof's in the pudding. I ask you, have you taken your son off casein?

Mine went from behaviorally retarded, about to be suspended from school and in

just three short months.STUDENT OF THE MONTH!!

I'm definitely on BOARD!!!

Rose

question from a skeptic

I have a 6 yo with severe autism. I have been following this list for

several weeks. Initially I was very interested but, with respect, I have to

say I find myself growing more and more skeptical. The theory behind

is fascinating with many parents reporting improvements. But the same could

be said for Chealation, enzymes & other supplements, secretin, AIT, Sensory

Integration, etc. Each of these has a devoted group of supporters with

their own email lists. Many can show you narrow scientific studies that seem

to support their " theory " of autism. However, these theories are not

supported by controlled outcome based studies of children with autism.

In my opinion, the gold-standard in Autism is still the UCLA ABA studies

done by Lovaas. ABA is a non-medical, behavioral based approach to autism.

The results: the average IQ increased by 20 points and more than 40% of the

children improved to the point that that autism professionals could not

distinguish them from neuro-typical peers. Follow up studies done years

later show the effects were lasting. Are there controlled studies for

children with autism that have been on the protocol?

It sounds like many on this list also have ABA programs. How can you know

what progress comes from ABA and what from the medications?

Anti-depressants directly affect the brain. Do you wonder if your ABA

program might show more progress if your child was not on the medications?

If protocol plus ABA is superior to ABA alone, then a higher

percentage of the children doing both should achieve the results that Lovaas

showed or they should achieve those results in shorter time. Is there any

study that shows this?

Also, if autism is an immune system disorder, how was it that a behavioral

based approach was so successful? And given the proven effectiveness of

intensive ABA therapy, why doesn't the protocol stress this be started

as soon as possible?

Respectfully,

Eland

[Guest guest]

>In my opinion, the gold-standard in Autism is still the UCLA ABA studies

>done by Lovaas. ABA is a non-medical, behavioral based approach to autism.

We started our Lovaas based ABA program in Mayish of 1999 and later,

it evolved into a more verbal behavior based ABA program. Our formalized

ABA program ended, with the encouragement of our board certified ABA

consultant who trained under Lovaas , in June 2002. From Sept 2001-

June 2002, there was a general fading. It is the absolute corner

stone of what we did.

> Are there controlled studies for

>children with autism that have been on the protocol?

No. There isn't.

> How can you know

>what progress comes from ABA and what from the medications?

For *US*, the fact that my child learned pronouns, etc came

from ABA. Here is what ABA did not do:

control diahrea.

Control Eczema

Control night terrors

Control weight loss

lower HHV6 titers

end chronic ear infections and antibiotic use.

reduce the " dilated eyes " that he used to have.

etc...

Now, I *assume* that because he didn't have chronic hemorroidal

flares, he was... more pleasant at the table and in generalization.

I also believe that he was more rested and ready to work.

Under our behavioral notes, I had the tutors also check his eye dilation.

We did a lot of things like that. Some of his " pissy " or " goofy " days

coincided with eye dilation.

>Anti-depressants directly affect the brain. Do you wonder if your ABA

>program might show more progress if your child was not on the medications?

I think that if a child is having a reaction to an SSRI, then yes,

it does affect your ABA program. That can't be denied. Delong's study

on SSRI usage (one which has a lot of holes in it) had children doing

ABA. They " claim " that the rate of learning in the ABA program took

off when the children started ABA. The only issue I have with this is that

those children were VERY young (two?) which means that they may not

have been in the ABA program long enough to know what the rate of learning

was.

>If protocol plus ABA is superior to ABA alone, then a higher

>percentage of the children doing both should achieve the results that Lovaas

>showed or they should achieve those results in shorter time. Is there

any

>study that shows this?

Nope. I am afraid that biomedical studies into autism, in general,

are lacking. I know that a famous behaviorst once lamented that it

was getting harder and harder for him to do follow up studies or

replication studies because ABA alone was NOT being used by many families.

It made it hard to separate what was what.

>

>Also, if autism is an immune system disorder, how was it that a behavioral

>based approach was so successful? And given the proven effectiveness of

>intensive ABA therapy, why doesn't the protocol stress this be started

>as soon as possible?

I stress that. I look at it like this.

Stroke patients.

Stroke patients had a " medical " issue that occured.

They still need rehab to learn to walk, eat, and speak.

ABA is the rehabilitative therapy that is essential to learning.

the is less concerned with rehab that dealing with the possible

*cause* of the need for rehab. When you look at the number of ASD

children who go on to develop seizures in adolescence, depression,

and other biochemical brain chemistry issues, it isn't unreasonable

to see why medical issues should be addressed- if needed. I happen

to have a good friend whose child is doing just as well as mine

and she didn't need a single biomedical approach not even the diet!

(THEN AGAIN, there were no bowel issues, her son was relatively

healthy, and has a completely DIFFERENT developmental history than

my child...It makes sense that her ABA program was all she needed)

In ABA terms, I had a strong E.O. (establishing operation)

to explore this considering my child had diahrea , was on

antibiotics for over a year, and had *bleeding* hemorroids.

The good news is that... we have been off our antivirals now for

a few days and... no noticable difference noted. I have a good

eye for what is a regression and how to document behavioral changes

thanks to ABA. This summer, Goldberg has agreed to.... try and

fade out the antifungal.... ABA gave me the skills to know and

observe behavioral changes and figure out if something was truly

just a " passing " thing or....

A.C.

http://www.aba-program-model.com

[Guest guest]

>ABA. They " claim " that the rate of learning in the ABA program took

>off when the children started ABA. The only issue I have with this is that

>those children were VERY young (two?) which means that they may not

>have been in the ABA program long enough to know what the rate of learning

>was.

Correction here. They claim the rate of learning in the

ABA program " increased " with the introduction of prozac.

My only problem was that the children could not have been

in ABA very long if they were barely two.

A.C.

[Guest guest]

You are missing the point. We do not treat autism we treat . The

diagnosis is based on history, physical and Blood work. We monitor the blood

work and as it improves so does the child. This is pediatric medicine. Kathy

-NNY

[Guest guest]

Rose, great about your son's progress! Correct me if I'm wrong, but

removing casein is not strictly a " " thing but a general dietary

intervention that lots of people, even those who are not " on board "

with the protocol, follow.

My general comment about the original " skeptic " question - just about

everyone I know experiments with various therapies, biomedical and

behavioral interventions to find what works for their child. I think

it would nearly impossible to conduct truly controlled studies on

or any other treatment protocol when various complementary

treatments are done at the same time. That's always been on my mind

as well when I read about , ABA, VB, RDI, etc.

> ~~

> The proof's in the pudding. I ask you, have you taken your son

off casein? Mine went from behaviorally retarded, about to be

suspended from school and in just three short months.STUDENT OF THE

MONTH!!

> I'm definitely on BOARD!!!

> Rose

[Guest guest]

" We do not treat autism we treat . The diagnosis is based on history,

physical and Blood work "

In our review of blood work with Dr. G he never mentioned anything that was

'abnormal'. To the best of my knowledge the only thing that fell out of the

'norm' in her blood work was slightly low iron. Yet she was put on the full

protocol. Call me a skeptic too but how is that science?

Regards,

Dave.

Re: question from a skeptic

You are missing the point. We do not treat autism we treat . The

diagnosis is based on history, physical and Blood work. We monitor the

blood

work and as it improves so does the child. This is pediatric medicine.

Kathy

-NNY

[Guest guest]

You make some really great points and have gotten some really great input

from folks on the list. I do have a few additional thoughts. While I have

great respect for ABA and the gains many children are enjoying from good ABA

programs, I have a problem with the assertion that it, or any other program

(including ) for that matter, is the only legitimate intervention for all

children in the autistic category. I think this type of thinking can be very

dangerous in our efforts to find real ways to help these children because it

doesn't consider the enormous variations in challenges and contributing

factors children in this huge spectrum face.

Considering just the ABA research, while 40% in the Lovaas study and, if I

recall correctly, the 30% or so shown to dramatically improve in the

replicated study is extremely impressive, what about the majority of the kids

in the study (the other 60-70%)? Yes, many of those did improve some or

quite a bit as well, but what kept them from improving more or moving into

the 30-40% group? My bet would be ongoing health issues.

I've been working with and following many families of kids diagnosed in the

autistic spectrum for over 7 years now and have seen such a huge variety and

degree of challenges and contributing factors that it does not surprise me

that 30-40% do not have contributing health challenges and thus improve or

emerge with behavioral or other therapy alone. But the majority of kids I've

seen do have contributing health issues that should be explored as part of

the total package. Unfortunately, my kiddo is one of the ones with multiple

health issues and seems to have needed and benefitted from the largest

variety of interventions. If we had only done ABA, Son-Rise or any other one

intervention alone, he'd probably be among the lowest functioning group today.

So how about a study that addresses health issues and does ABA? That would

be interesting, but as a former researcher, I think it would be impossible to

get a clear study done because many of the health issues and appropriate

health interventions are so different between the kids that you'd have to

come up with subgroups upon subgroups to match the kids well enough to make

it an apples to apples comparison.

I think the " Protocol " would also be hard to run a clear research study

on in the way you are probably wanting (looking at mainly behavior and

overall decrease in autistic characteristic) for that reason as well because

it varies so much from kid to kid. You could do studies that run the

pre-testing to see how many kids show abnormal lab results and then how well

they improve on paper but comparing improvement between kids on different

medicines, dosages, etc isn't exactly good research.

Having said that though, I would like to see more of the money that is being

pumping into the genetics of autism be pumped into researching treatment

options.

Gaylen

[Guest guest]

In a message dated 3/27/03 10:43:30 AM Central Standard Time,

dave.serrano@... writes:

<< n our review of blood work with Dr. G he never mentioned anything that was

'abnormal'. To the best of my knowledge the only thing that fell out of the

'norm' in her blood work was slightly low iron. Yet she was put on the full

protocol. >>

I'm curious to know how many kids this is true for? My son's blood work

showed very clear abnormal results in several areas and I know of others who

also showed many things off. Anyone know how many kids don't show clear

abnormal results yet still respond well to Dr. G's treatments?

Gaylen

[Guest guest]

Hi Dave,

I'll let the more scientifically inclined answer in detail, but bloodwork is

only a part of the equation. Kathy also said " history " and " physical " . It is

a well-known phenomenon for blood abnormalities to " hide " when the immune system

is in dysfunction. Many parents here have reported that their child's blood

work didn't show the typical abnormalities (i.e., elevated viral or yeast

titers) until *after* starting the protocol because the immune system was

finally starting to work properly.

There are " markers " in a child's history and symptoms which give clues, even if

the bloodwork is inconclusive. At our first visit, based on my son's history

and symptoms, Dr. Goldberg suspected more yeast involvement than viral, so he

was started on Nizeral even though the bloodwork results had not yet come back.

As it turned out, only one yeast titer was elevated, and not even very much.

Yet, his stimming and most of his sensory issues, which we had worked on with

ABA, Floortime, and OT for a year and a half with only limited success,

disappeared almost overnight after starting the Nizeral. The kicker for me was

the fact that the sensory issues *increased* dramatically during the " die-off "

stage and then, BOOM, we had a dramatically brighter, calmer, more alert child

who wasn't stimming, was climbing and swinging at the park, and approaching

peers to play *without prompting*. He still needs behavior intervention to

learn appropriate social skills, and he regresses when he's ill or when it's

time to change a medication, but he always bounces back and then makes even

better progress.

Have you visited the conference area of www.neuroimmunedr.com? Dr. Goldberg

often participates in the Tuesday night chats, and the archives there have tons

of information regarding the science of from Dr. Goldberg himself.

Hope that helps a bit.

Regards,

Donna

Re: question from a skeptic

You are missing the point. We do not treat autism we treat . The

diagnosis is based on history, physical and Blood work. We monitor the

blood

work and as it improves so does the child. This is pediatric medicine.

Kathy

-NNY

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

I know there a few few kids that Dr. Goldberg treats whose bloodwork isn't

out of range. However, that being said, it does not mean that the child

does not have . Kathy mentioned history which is a huge component of

Dr. Goldberg's theory. Basically if a child has learned to roll over, sit

up, walk and start to talk (even sounds), then loose skills, or fail to

advance, how can there be a developmental delay? Something has happened to

a child physically that will cause these things to regress or halt

development. Dr. Goldberg is quite certain through his experience that if

he ran a Neurospect Scan on a child with " normal " bloodwork, but has a

history of normal development to a certain age and regress or stagnated,

their Neurospect would show very strong abnormalities. I don't fully

understand the physiology, however I believe that it has something to do

with the immune system in a state of constant attack on the virus or other

entity, that in essence it becomes normal for that body to be in that

state. I think once the immune system cools, other things things in the

blood start showing up.

Lori

RE: question from a skeptic

" We do not treat autism we treat . The diagnosis is based on history,

physical and Blood work "

In our review of blood work with Dr. G he never mentioned anything that

was

'abnormal'. To the best of my knowledge the only thing that fell out of

the

'norm' in her blood work was slightly low iron. Yet she was put on the

full

protocol. Call me a skeptic too but how is that science?

Regards,

Dave.

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

Lori,

I'm not trying to single you out here but I have read many of the abstracts

posted on this list, many of which show interesting things, but none of it

'proves' much of anything. The term '' itself is a bit nebulous as far

as a disorder. I would imagine at least 9 out of 10 med students could take

good guesses as to what a neuro-immune disorder is but I don't think they

could look up in a book and find a list of well-defined ones (maybe they

could, but I sure don't think they would find autism/ADHD in the list). I

couldn't find a single reference to '' or 'neuro-immune' on Medscape.

>>Basically if a child has learned to roll over, sit up, walk and start to

talk (even sounds), then loose skills, or fail to advance, how can there be

a developmental delay?<<

There are many diseases including Fragile X and Muscular Dystrophy as

examples that do not bear themselves at birth but rather at a much later

age. Kids/adults losing ability is not uncommon and proves nothing in terms

of a neuro-immune disorder in and of itself.

>>Dr. Goldberg is quite certain through his experience that if he ran a

Neurospect Scan on a child with " normal " bloodwork, but has a history of

normal development to a certain age and regress or stagnated, their

Neurospect would show very strong abnormalities.<<

Probably true the Neurospect would show reduced blood flow. That isn't

surprising. He doesn't however have the proof that a virus or other

neuro-immune disorder is causing that loss of bloodflow. I could ask 10

other qualified doctors and probably get 6 or 7 very good, plausible

answers. What did their bloodflow look like at birth? At 6, 12, 15 months?

Was it always low?

>> however I believe that it has something to do with the immune system in a

state of constant attack on the virus or other entity, that in essence it

becomes normal for that body to be in that state.<<

I respect your opinion but does not scientifically show me much of anything.

>>I think once the immune system cools, other things things in the blood

start showing up.<<

I don't know what this means. If he can't show me that the immune system is

'hot', how does he know when it 'cools down'?

Along these sames lines I don't understand the term 'die off'. I hear a lot

about it but the best description I got was " These bugs get really nasty

when they are being killed " (quote from Dr. G). Everything seems to be

blamed on die-off but I haven't seen a good abstract on the physiological

aspect of die-off (would welcome one though). Is 'die off' why I feel so

bad when I have the flu? Is it the virus flaring up when my body is trying

to get rid of it?

In case you can't tell my daugther hasn't experienced any breakthroughs on

the protocol. I can't tell any difference in her now as opposed to a few

months ago. I'm certainly not opposed to anyone using the protocol and am

very glad to hear the success stories. However, I am very skeptical on the

claim that is THE cause of autism. I think science has a way to go

before anyone can start making that claim.

Again, these questions fit very well in the context of Lori's email but is

not meant to be specifically towards her (or anyone for that matter). And

of course I welcome all abstracts specifically pertaining to my questions

and concerns.

Regards,

Dave.

RE: question from a skeptic

I know there a few few kids that Dr. Goldberg treats whose bloodwork

isn't

out of range. However, that being said, it does not mean that the child

does not have . Kathy mentioned history which is a huge component

of

Dr. Goldberg's theory. Basically if a child has learned to roll over,

sit

up, walk and start to talk (even sounds), then loose skills, or fail to

advance, how can there be a developmental delay? Something has happened

to

a child physically that will cause these things to regress or halt

development. Dr. Goldberg is quite certain through his experience that

if

he ran a Neurospect Scan on a child with " normal " bloodwork, but has a

history of normal development to a certain age and regress or stagnated,

their Neurospect would show very strong abnormalities. I don't fully

understand the physiology, however I believe that it has something to do

with the immune system in a state of constant attack on the virus or

other

entity, that in essence it becomes normal for that body to be in that

state. I think once the immune system cools, other things things in

the

blood start showing up.

Lori

[Guest guest]

I said History and physical. History includes your child's entire medical

record, every evaluation he has ever had, and a very long application. Having

read over 150 of these applications (and having done one for my own child) I

know from the coffee cup rings, food stains, cross outs, writing up and down

the sides of the forms (all 10 pages) that these are extremely time consuming

to fill out. In addition we require the parents to write their own history of

the child to covers what they think are their major concerns and anything

that the forms do not cover.

The diagnosis of autism is very often made on a cursory examination looking

at behaviors only. The diagnosis of is not made that way. Kathy -NNY

[Guest guest]

If you have a disease, for example TB, you do not go to a physical therapist

for treatment, you go to a Health care provider who does a history, physical,

and tests. A diagnosis is made and a treatment plan is put into effect. If

the test results have demonstrated the presence of a pathogen (germ) then the

appropriate medication must be prescribed. Physical therapy does not kill

pathogens.

Children with have a disease. They have various viruses doing

destructive things in their bodies which includes their brains. If untreated

they may get dead tissue areas in their brains. they may also have fungi, and

various bacteria doing destructive things in their bodies as well. ABA does

not kill viruses, bacteria or fungi. You cannot compare a medical treatment

to a training program. ABA may be helpful at some point for a period of time

for some children on the protocol. This is an individual issue. Kathy

-NNY

[Guest guest]

There are a number of subgroups of children with . The immune system is

extremely complicated and while it is dysfunctional in all kids with the

dysfunction's vary. Some of these kids will get better on their own and it

may appear that any of the therapies used on that child at that particular

time is the reason for the improvement. However, as the immune system is

still dysfunctional there is also no guarantee that the improvement is life

long. Children with immune dysfunction do grow up into adults with immune

dysfunction. You may have ADHD as a child and Chronic Fatigue as an adult...

A dysfunctional immune system may right itself for a time but there are

plenty of triggers to set it off again. Kathy -NNY

[Guest guest]

Immune bloodwork, CBC's etc can change dramatically from day to day and

across a day.

Also, when a blood sample is taken, then only a sample of cells are studied.

I asked a lab for a recount once when the result I got was too normal (too

good to be true and previously and successively out of range) they

re-examined the same blood sample and counted 30 times more cells and and

EOS count went up by 2%!! When you consider the normal range for

Eosinophils is 0-6% - this is a large variance. A statistician friend

verified that the statistical error in the first count (standard procedure)

was very large. It is over time with successive bloodwork that a pattern

emerges.

In other words, blood work may not show up what you are looking for

immediately - all other things need to be taken into account as mentioned in

previously counts. By the way, a slightly low iron count as mentioned in the

post below is significant and very typical of the condition.

RW

RE: question from a skeptic

" We do not treat autism we treat . The diagnosis is based on history,

physical and Blood work "

In our review of blood work with Dr. G he never mentioned anything that

was

'abnormal'. To the best of my knowledge the only thing that fell out of

the

'norm' in her blood work was slightly low iron. Yet she was put on the

full

protocol. Call me a skeptic too but how is that science?

Regards,

Dave.

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the original author, and is not necessarily endorsed by or the

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[Guest guest]

----Original Message Follows----

From: dave.serrano@...

The term '' itself is a bit nebulous as far

as a disorder. SNIP> I couldn't find a single reference to '' or

'neuro-immune' on Medscape.

Hi Dave,

Try using neuroimmune without the -. Below is a sample of what came up.

You can also use key words like neuroimmunology, cytokines, chemokines,

brain, CNS, etc.

Cheryl

Pasic J, Levy WC, Sullivan MD.

Cytokines in depression and heart failure.

Psychosom Med. 2003 Mar-Apr;65(2):181-93.

PMID: 12651985 [PubMed - in process]

Boisse L, Sickle MD, Sharkey KA, Pittman Q. Compromised neuroimmune status

in rats with experimental colitis.

J Physiol. 2003 Mar 14 [epub ahead of print]

PMID: 12640019 [PubMed - as supplied by publisher]

Buller KM.

Neuroimmune stress responses: reciprocal connections between the

hypothalamus and the brainstem.

Stress. 2003 Feb;6(1):11-7.

PMID: 12637203 [PubMed - in process]

Gay J, Ressayre L, -Villar R, Bueno L, Fioramonti J. Alteration of

CCK-induced satiety in post-Nippostrongylus brasiliensis-infected rats.

Brain Behav Immun. 2003 Feb;17(1):35-42.

PMID: 12615048 [PubMed - in process]

5: [No authors listed]

[in Process Citation]

Yoon S, Lee HW, Baek SY, Kim BS, Kim JB, Lee SA. Upregulation of TrkA

neurotrophin receptor expression in the thymic subcapsular, paraseptal,

perivascular, and cortical epithelial cells during thymus regeneration.

Histochem Cell Biol. 2003 Jan;119(1):55-68.

PMID: 12548406 [PubMed - in process]

Kerzel S, Path G, Nockher WA, Quarcoo D, Raap U, Groneberg DA, Dinh QT,

Fischer A, Braun A, Renz H.

Pan-neurotrophin receptor p75 contributes to neuronal hyperreactivity and

airway inflammation in a murine model of experimental asthma.

Am J Respir Cell Mol Biol. 2003 Feb;28(2):170-8.

PMID: 12540484 [PubMed - indexed for MEDLINE]

11: Ferri CC, Ferguson AV. Related Articles, Links

Interleukin-1 beta depolarizes paraventricular nucleus parvocellular

neurones.

J Neuroendocrinol. 2003 Feb;15(2):126-33.

PMID: 12535154 [PubMed - indexed for MEDLINE]

Akassoglou K, Douni E, Bauer J, Lassmann H, Kollias G, Probert L.

Exclusive tumor necrosis factor (TNF) signaling by the p75TNF receptor

triggers inflammatory ischemia in the CNS of transgenic mice.

Proc Natl Acad Sci U S A. 2003 Jan 21;100(2):709-14.

PMID: 12522266 [PubMed - indexed for MEDLINE]

Choudhary RK, Hassn AM. Related Articles, Links

Managing acute appendicitis. Neuroimmune appendicitis may be distinct

pathological entity.

BMJ. 2003 Jan 4;326(7379):49. No abstract available.

PMID: 12518765 [PubMed - indexed for MEDLINE]

Bedoui S, Kawamura N, Straub RH, Pabst R, Yamamura T, von Horsten S.

Relevance of neuropeptide Y for the neuroimmune crosstalk.

J Neuroimmunol. 2003 Jan;134(1-2):1-11. Review.

PMID: 12507767 [PubMed - indexed for MEDLINE]

Persidsky Y, Gendelman HE. Related Articles, Links

Murine models for human immunodeficiency virus type 1-associated dementia:

the development of new treatment testing paradigms.

J Neurovirol. 2002 Dec;8 Suppl 2:49-52. Review.

PMID: 12491151 [PubMed - indexed for MEDLINE]

Sharkey KA, Mawe GM.

Neuroimmune and epithelial interactions in intestinal inflammation.

Curr Opin Pharmacol. 2002 Dec;2(6):669-77.

PMID: 12482729 [PubMed - in process]

Langford D, Masliah E. Related Articles, Links

Role of trophic factors on neuroimmunity in neurodegenerative infectious

diseases.

J Neurovirol. 2002 Dec;8(6):625-38. Review.

PMID: 12476355 [PubMed - indexed for MEDLINE]

Gendelman HE. Related Articles, Links

Neural immunity: Friend or foe?

J Neurovirol. 2002 Dec;8(6):474-9. Review.

PMID: 12476342 [PubMed - indexed for MEDLINE]

Nishida A, Hisaoka K, Zensho H, Uchitomi Y, Morinobu S, Yamawaki S.

Antidepressant drugs and cytokines in mood disorders.

Int Immunopharmacol. 2002 Nov;2(12):1619-26.

PMID: 12469936 [PubMed - in process]

_________________________________________________________________

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[Guest guest]

>I

>know from the coffee cup rings,

hehe... I think Kathy has been peeping in my files!

I thought that was my signature line.

A.C.

[Guest guest]

Thanks everyone who responded. I have a little bit of reading to do. I am

still not convinced my daughter has but appreciate you folks helping me

out.

Dave.

[Guest guest]

> Along these sames lines I don't understand the term 'die off'. I

>hear a lot about it but the best description I got was " These bugs

>get really nasty when they are being killed " (quote from Dr. G).

>Everything seems to be blamed on die-off

Hi Dave. Welcome to the list. I am happy to see some posters

ask some serious questions. I think that is something that needs

to happen with all therapies. It is especially good for us

" old-timers " because it is very easy to get complacent when

you find yourself in a good groove.

First off, I would like to say that you are right. There is

a growing tendency for *some* parents to blame yeast or die off

on *everything*.

I think the reasons for this are numerous. ASD is such a challenge

to parents and parents are full of unknowns and variables. I also

think that our kids are watched so incredibly closely that we tend

to think second to second and not day to day or month to month.

Child development doesn't occur second to second. Normal children

have " pissy days " or " a bad week " . A true regression is not

being a jerk for a few days... it is a loss of skills over time.

My son has this wonderful knack for developing an illness right

when I start a new medication! It is frustrating. Recently, we

increased his tenex dose (tenex is a blood pressure medication

used off label for ADHD). Guess what? He came down with some

bizarre low grade fever thing with vomitting. The first few

days he was lethargic. After a week, I thought the tenex was

working because he seemed calmer. However, now, four weeks later,

I realise it wasn't. He was just still sick. It wasn't until the

second and third week that I realised that he was back to where he

was....

I also think there is a problem with parents attributing gains

to the wrong thing. I think there are normal developmental

spurts in a child. For instance, I have seen many typical 18-24

month old children " suddenly take off " in language, etc. I have

also seen a developmental spurt occur between 3.5-4.5. My own

son, prediagnosis, went through a developmental spurt around

4 years of age. If I had decided to force him to wear a red

hat during that time, then I might be inclined to attribute it

to wearing a red hat and not a normal " spurt " . Unfortunately,

we hadn't begun intervention at that time. The only thing to change

for him was the birth of my twins and ... removing milk from his

diet.

That said... die off does happen. Here is an old post I wrote on

it in response to someone else- A.C.

> Can anyone explain to me what die off is

I know that the use of antifungals can cause something called

" die-off " . Die off reactions are the result of something being

kicked off. For instance, in yeast, the die off reaction is

a Herxheimer reaction. A person can feel worse rather than better.

(this would be a possible reason that a parent might call

Goldberg after starting antifungals complaining that there

child is having a reaction. Some are surprised to hear the

advice to give tylenol and continue meds.) For a Herxheimer

die off, a child can feel like he has the flu. He may be really

tired. He may have fever. The idea is that the herxheimer

reaction is due to an abnormal release of organic acids as the yeast

die off. The yeast are filled with toxins. When you give the

antifungal, the yeast " burst " as they die off. These toxins are

then absorbed into your system and execreted through your urine.

This type of reaction can also occur with bacteria overgrowths as

well.

With antivirals, I am slightly unclear about the die off

process. I hadn't heard that there was an actual die off. I assume

that valtrex works by interfering with how the

herpes virus works (according to this webpage:

http://www.patientcenters.com/autism/news/med_reference.html

BTW, what do others think of this site? It seems to suggest

that antivirals are not the best idea... hmmm... )

Goldberg mentions something about die off here:

http://www.navitas.se/articles/cfsadd.htm but it is targetted

more towards yeast die off.

I think that with some patients (and I am not a doctor), antivirals

might " kick something up " which might make a patient feel bad.

this usually happens when your body is exposed to anything. For

instance, when your immune system decides to fight a fever or cold,

it raises the body temperature. It isn't the fever or cold that

does it, it is your immune system. A fever is more a sign that your

body is fighting an infection. (at least, that is what I was

always led to believe). I suppose that if an antiviral was given,

it might make the body more prepared to fight an infection and the

typical signs of a body fighting an infection and working hard

would appear (letharic behaviors, fever, etc)

Maybe if someone else understands this process better than me

they can jump in.

>, if/when to expect it?

My son was on valtrex and we didn't notice much. This actually

concerned Goldberg who switched us to Famvir. Where a

die off/reaction thing occured was with the antifungal. We

started with Nizoral and he was incredibly pissy. It was really

awful. He scowled constantly. With a die off, you ride through

it but it is short lived. Our die off continued and continued.

Tylenol didn't help. This told us that there might be a drug

interaction problem and we switched to Diflucan. The problems

stopped over a period of a week. When we switched from Diflucan

to lamisil, there wasn't any die off which was a good sign

and showed that diflucan was doing its job. The same thing occured

when we switched to amphoceterin B. No die off showed. No changes

occured.

> My

> son is 3 years old and we just started dosing Valtrex and want to

> understand the difference between " side-effects " and actual

> effectiveness of the medication.

Die off appears to be a short lived thing (a week or two) followed by

improvements. Drug reactions don't go away. They keep going and

going... Things like a " rash " are often drug reactions. Things

like " being pissy " might or might not be a drug reaction but a die

off reaction. Tylenol may help with the symptoms.

http://www.neuroimmunedr.com/Articles/Autism___PDD/newdefinition.pdf

Here Goldberg says that a die off is a 1-2 week thing. (read page 8-

9)

For yeast die off, Dr. Shaw recommends a few approaches:

1. Limiting sugars in the diet before starting.

2. Give Alkaseltzer Gold to neutralize the acids (warning,

don't give any other kind of alkaselzter)

3. giving some extra b-6 supplements.

I know that Goldberg suggests Tylenol.

for an antiviral flare, I would assume that Tylenol will

reduce the systems which would appear for a week or so.

However, I tend to gravitate towards Children's Motrin because

it is GFCF

When we increased the famvir dose, we noticed that he seemed

to be doing just fine. We didn't notice any worsening of behavior

before getting better. We also didn't notice much in the first

month after reducing our famvir dose.

A.C.

[Guest guest]

A couple more thoughts on skeptism.

1. While I too wish there were more studies etc ... on the

hypothesis, I think it is important to remember that we are in the

very early stages of an emerging epidemic that did not exist in this

way even a decade ago. As someone recently said to me " our kids are

the canaries " in this story. Therefore, it's quite understandable,

ahtough frustrating, why there aren't more studies but many of us are

simply not willing to wait another 15 years for them.

2. While many good and fair questions are being raised about the

hypothesis on this site, it seems to me that it still makes far more

sense than what other medical professionals tell us -- even without

the answers to the questions we cannot answer.

Compare the hypothesis to what I -- like so many others -- was

given by my local experts ... which went something like this:

" Your son has autism. He was born with it, even though you never saw

any sign of it until he was 17 months old. Yes, I know he used to be

able to talk and identify all sort of different things, but he was

always autistic. We can tell, just from watching him play for 20

minutes in our office. What's that?? You say he was fine until he had

all those ear infections and started guzzling milk as though he was

addicted and then had all those ear infections and anti-biotics and

then had the chicken pox. That has nothing to do with it. Stop being

so silly. What's that? You say his blood shows all sorts of

abnormalities in his immune system. You're wasting your time. (And by

the way, who the hell ordered all this bloodwork on a 3-year-old????

**** true story ****) Your son was just born this way ... just like

all the other kids who are autistic. Ya, we know there are more of

them these days but that's just because we'd always just overlooked

them in the past. We're so much better at what we do now. But there's

nothing you can do for him except get him into therapy. "

My apologies for the (mild) sarcasm and (slight) embellisments but I

think it illustrates my point about the absurdity of what's going on

out there.

Dave

[Guest guest]

Dave,

First and foremost there are many neuro immune diseases...RSD, Narcolepsy,

MS to name a few...A search shouldn't be hard. As far as your mention of

Fragile X and MD as not being present from birth, we need to compare apples

to apples. Fragile X is a genetic disorder and is therefore present from

birth. While not always diagnosed or " caught " , there are some very specific

physical features to this disorder that are present, if one knows what to

look for from birth. MD, as far as I know is also present from birth, but

is also not considered a " developmental delay " as is the case with

Autism/PDD. Dr. Goldberg doesn't claim to " cure autism " . Let's be very

clear. He claims that kids, are kids that have immune dysfunction that

affects their brain and can give them autistic symptoms. By addressing

their immune issues, and making the child healthier, the symptoms that got

them the label, coincidentally dissipate. I am not at all certain how common

it is for people to lose abilities as you seem to claim. Short of a stroke

or disease, I can't imagine any healthy person losing abilities that they

had. That to me screams disease process, which would be immune related.

All the behavioural modification in the world will not change the physiology

or health of a child. It is more than a coincidence that vast numbers of

kids in the spectrum have had ongoing diarrhea, chronic ear infections and

assorted other ongoing illnesses. There must have been some compelling

evidence in the first place that took you to Dr. Goldberg's door. While you

may be disappointed that you haven't seen results yet, I know many immune

issues are complex and take a great deal of time to heal. I would suggest

you discuss your skepticism with Dr. Goldberg yourself at either your

monthly phone conference, or on his Tuesday night chat. He would know

better than anyone why he is suggesting what he is where your child is

concerned. While we are all trying to learn as much as we can, we are just

parents, and are only experts on our own children.

I wish you the best of luck with your journey,

Respectfully,

Lori

----Original Message-----

From: dave.serrano@... [mailto:dave.serrano@...]

Sent: Thursday, March 27, 2003 5:07 PM

Subject: RE: question from a skeptic

Lori,

I'm not trying to single you out here but I have read many of the

abstracts

posted on this list, many of which show interesting things, but none of it

'proves' much of anything. The term '' itself is a bit nebulous as

far

as a disorder. I would imagine at least 9 out of 10 med students could

take

good guesses as to what a neuro-immune disorder is but I don't think they

could look up in a book and find a list of well-defined ones (maybe they

could, but I sure don't think they would find autism/ADHD in the list). I

couldn't find a single reference to '' or 'neuro-immune' on Medscape.

>>Basically if a child has learned to roll over, sit up, walk and start

to

talk (even sounds), then loose skills, or fail to advance, how can there

be

a developmental delay?<<

There are many diseases including Fragile X and Muscular Dystrophy as

examples that do not bear themselves at birth but rather at a much later

age. Kids/adults losing ability is not uncommon and proves nothing in

terms

of a neuro-immune disorder in and of itself.

>>Dr. Goldberg is quite certain through his experience that if he ran a

Neurospect Scan on a child with " normal " bloodwork, but has a history of

normal development to a certain age and regress or stagnated, their

Neurospect would show very strong abnormalities.<<

Probably true the Neurospect would show reduced blood flow. That isn't

surprising. He doesn't however have the proof that a virus or other

neuro-immune disorder is causing that loss of bloodflow. I could ask 10

other qualified doctors and probably get 6 or 7 very good, plausible

answers. What did their bloodflow look like at birth? At 6, 12, 15 month

s?

Was it always low?

>> however I believe that it has something to do with the immune system in

a

state of constant attack on the virus or other entity, that in essence it

becomes normal for that body to be in that state.<<

I respect your opinion but does not scientifically show me much of

anything.

>>I think once the immune system cools, other things things in the blood

start showing up.<<

I don't know what this means. If he can't show me that the immune system

is

'hot', how does he know when it 'cools down'?

Along these sames lines I don't understand the term 'die off'. I hear a

lot

about it but the best description I got was " These bugs get really nasty

when they are being killed " (quote from Dr. G). Everything seems to be

blamed on die-off but I haven't seen a good abstract on the physiological

aspect of die-off (would welcome one though). Is 'die off' why I feel so

bad when I have the flu? Is it the virus flaring up when my body is

trying

to get rid of it?

In case you can't tell my daugther hasn't experienced any breakthroughs on

the protocol. I can't tell any difference in her now as opposed to a few

months ago. I'm certainly not opposed to anyone using the protocol and am

very glad to hear the success stories. However, I am very skeptical on

the

claim that is THE cause of autism. I think science has a way to go

before anyone can start making that claim.

Again, these questions fit very well in the context of Lori's email but is

not meant to be specifically towards her (or anyone for that matter). And

of course I welcome all abstracts specifically pertaining to my questions

and concerns.

Regards,

Dave.

RE: question from a skeptic

I know there a few few kids that Dr. Goldberg treats whose bloodwork

isn't

out of range. However, that being said, it does not mean that the child

does not have . Kathy mentioned history which is a huge component

of

Dr. Goldberg's theory. Basically if a child has learned to roll over,

sit

up, walk and start to talk (even sounds), then loose skills, or fail to

advance, how can there be a developmental delay? Something has happened

to

a child physically that will cause these things to regress or halt

development. Dr. Goldberg is quite certain through his experience that

if

he ran a Neurospect Scan on a child with " normal " bloodwork, but has a

history of normal development to a certain age and regress or stagnated,

their Neurospect would show very strong abnormalities. I don't fully

understand the physiology, however I believe that it has something to do

with the immune system in a state of constant attack on the virus or

other

entity, that in essence it becomes normal for that body to be in that

state. I think once the immune system cools, other things things in

the

blood start showing up.

Lori

[Guest guest]

Thanks. One item caught my eye on this:

>>I would suggest you discuss your skepticism with Dr. Goldberg yourself at

either your monthly phone conference, or on his Tuesday night chat.<<

This I have done and to be quite frank this is one of the main reasons I

remain skeptical. I am little tired of him raising his voice to me and my

wife and going on mini-trantrums about not enough funding and " losing a

generation of kids " if the proper drugs are not developed and " what am I

doing reading stuff on the internet " (that's not his stuff). I have

provided him literature on several items for his review. He could have

studied it and given me reasons why he thought it invalid. Instead I get an

earful on stuff that are not relevant to my questions. It seems if I am not

100% 'on board' and expect proof and require good explanations (I don't care

how technical he gets with me...I like that) that I am somehow a 'renegade'.

To be honest I find his bedside manner pushy and arrogant. Sorry Dr. G, the

facts that (a) my daughter is autistic and ( gets sores in her mouth are

simply not enough to demonstrate to me that she is a child. Maybe it

is to him but I expect him to provide me with the data. Actually the sores

in her mouth are what drove me to see him. However, to date I have seen no

movement in their reduction. I have no issue with a doc that says he can't

help me. But I struggle with his insistence on when we haven't seen

any changes with Valtrex, Famvir, Nizoral, or Paxil to date (or her

bloodwork for that matter). Again, I have no problem with " if something's

broke, fix it " but I personally haven't been shown what's broke.

For every scientific post supporting its claims there is a piece of

research supporting DAN! or CAN. Thus, there are many organizations with

lots of data, each supporting their position. Dr G has taken up as his

religion but that shouldn't mean that every piece of literature published by

'the dark side' is incorrect. Personally I find the overall evidence

compelling but not convincing. I have not picked a camp. I try to read (or

at least skim) it all (well, at least stay up to date). After years of

reading I can say definitively that I don't know much about the biology of

autism or what helps it from a biomedical approach.

Thanks again everyone for the info and thoughts. I promise this is my last

post on this topic.

Dave.

RE: question from a skeptic

Dave,

First and foremost there are many neuro immune diseases...RSD,

Narcolepsy,

MS to name a few...