neuroimmune research

[Guest guest]

Right, I do understand what you're saying. But as just said

in one of her previous posts, it's a standard hypo-allergenic diet,

prescribed by many mainstream doctors for a variety of conditions, as

opposed to an " autism " diet, and there is no mega-dosing of

suppliments, which DAN doctors often recommend.

> >>>> just fyi - there is a new group for discussion of

> >>> neuroimmune

> >>>> issues called 'neuroendocrineimmune'. It is an informal list

> >> for

> >>>> people interested in the discussion of all " aspects of

> >>>> NeuroEndocrineImmune issues and CNDS (Chronic

> >>>> NeuroendocrineimmuDysfunction Syndrome) -- whether specific to

> >> ASD

> >>> or

> >>>> not... " (from the homepage.) My understanding is that the focus

> >>> will

> >>>> be on current research.

> >>>>

> >>>> fwiw,

> >>>> timary

> >>>>

> >>>>

> >>>>

> >>>>

> >>>>

> >>>> Responsibility for the content of this message lies strictly with

> >>>> the original author(s), and is not necessarily endorsed by or the

> >>>> opinion of the Research Institute and/or the Parent

> >>> Coalition.

> >>>>

> >>>>

> >>>>

> >>>>

> >>>>

[Guest guest]

Well, this is actually what I wanted to hear because I want to pursue

for my son, but a previous DAN doc who did some initial testing

recommended that my son be GF/CF/SF and SCD and he really didn't point

me to any labs that would indicate a need. His GI workup from a

mainstream GI showed everything normal (blood and stools), so I would

have to see some hard evidence before I would deprive him of practically

every food on earth. I am especially troubled in that most of the kids

that I know on really restrictive diets ended up with more GI problems

than they started with, plus they are not progressing as much as my son

who is doing nothing right now. MY son's neuro says its okay if we want

to do it, but that he hasn't really seen it make much of a difference

except for those with true celiac/chrons and he sees the most ASD kids

in the state. So, this part has always bothered me about the diet, the

just random application of it. I have asked every parent locally who

follows strict diets and none of their kids are doing particularly well

on them at least they don't seem that well off to me. So, I would love

to know exactly what labs are used to diagnose food allergies, I would

love to look into it.

Re: neuroimmune research

Hi ,

Because, in the protocol, children are treated according to their

specific lab test results, which is different than just prescribing

some one-size-fits-all, arbitrary " autism " diet. There's nothing

" alternative " about avoiding foods that you are proven, through

laboratory testing, to be allergic to

..

Donna

> > > just fyi - there is a new group for discussion of

> > neuroimmune

> > > issues called 'neuroendocrineimmune'. It is an informal list

> for

> > > people interested in the discussion of all " aspects of

> > > NeuroEndocrineImmune issues and CNDS (Chronic

> > > NeuroendocrineimmuDysfunction Syndrome) -- whether specific to

> ASD

> > or

> > > not... " (from the homepage.) My understanding is that the focus

> > will

> > > be on current research.

> > >

> > > fwiw,

> > > timary

> > >

> > >

> > >

> > >

> > >

> > > Responsibility for the content of this message lies strictly with

> > > the original author(s), and is not necessarily endorsed by or the

> > > opinion of the Research Institute and/or the Parent

> > Coalition.

> > >

> > >

> > >

> > >

> > >

[Guest guest]

,

Our children have compromised immune systems. A common feature of this is

raised allergy levels to certain foods. It may not be obvious - ie does not

necessarily mean rashes appear etc, however one sign is often raised

Eosinophil counts (esp. when there is no parasite, bacterial or fungal

infection in the gut). The system reacts when it shouldn't. Standard

allergy reactivity tests (IgE) may not find a problem, however IgG4 tests

can indicate which foods the system is reacting to (not always). The idea

with diet is to further (in addition to anti-fungal and anti-viral meds)

reduce the stress on the immune system, promoting the best possible blood

flow to assist in nourishing the brain. In that sense it is not alternative,

but central to keeping the immune system from adversely reacting to foods

when it shouldn't.

Hope this helps,

Re: Re: neuroimmune research

Jin

I am glad your son is doing well under Dr Goldberg's care. Dr G is

definitely against adding in alternative medicine into the medication

routine for a child under his care.

If you are adding in alternative medicines you should make him aware

of this. But I will tell you he will tell you how strongly he feels that

there is no place for alternative meds in the form of megavitamins,

megaaminos, chelation, hyperbaric oxygen therapy.

In fact, you will note some of the flaming posts from the

moderator indicates promoting alternative meds on this board is not

tolerated.

I understand you feel very strongly about supporting Dr Bruce (Phd)

and alternative medicines, and I respect you as a person trying to help

your child, that really is wonderful.

I wish only the best to you and your child. Good Luck and God Bless

jinyang061629 <yanglou@...> wrote:

I went to a Dan doctor for about two year before I finally went to

Dr. Goldberg, because there is no main stream MD will take on his

approach, and many parents I spoke to did not think Dr. Goldberg's

protocol is a viable alternative. Dr. Globerg's protocol like it or

not, is also considered to be an alternative method to main stream

medicine which basically does nothing to help.

In you first post, because there were some terms in Dr. Bruce's

profile you do not like, you were basically tell people Dr. Bruce

must be some kind of Con doctor.

I think you are doing a dis-service to group members who can not fly

to see Dr. Goldberg, but may be able to get help from Dr. Bruce.

I also think that you are unfair to Dr. Bruce. Dr. Bruce is based in

Texas, and was working at NY Clinic. His son was a Dr Goldberg's

patient. There are parents in this group have been seeing him, or

planning to see him. Especially those live at north east and south

east corner of the country. I have not heard any complaint, but from

time to time, I have read that he helped some family greatly.

My suggestion for you is call him up, like you did with Dr. Goldberg,

do some more in depth research, before you form your opinions. You

can find his number from NY clinic:

http://www.nidsnnyclinic.org/id1.html

Just give you some background. My son is doing quite well under Dr.

Goldberg's care, he is a six grader, has more then one best friends,

on 98/99% nationally on math and reading, and had just took SAT for

gifted children, and just got Brown belts for TKD.

By the way, I went to a Dan Doctor for two years before we start see

Dr. Goldberg. Althrough I do not agree with Dan doctor's approach,

but I am not going to stand here and telling people that Dan doctors

are con doctors. There are kids helped greatly by Dan doctors.

Jin

> > just fyi - there is a new group for discussion of

> neuroimmune

> > issues called 'neuroendocrineimmune'. It is an informal list

for

> > people interested in the discussion of all " aspects of

> > NeuroEndocrineImmune issues and CNDS (Chronic

> > NeuroendocrineimmuDysfunction Syndrome) -- whether specific to

ASD

> or

> > not... " (from the homepage.) My understanding is that the focus

> will

> > be on current research.

> >

> > fwiw,

> > timary

> >

> >

> >

> >

> >

> > Responsibility for the content of this message lies strictly with

> > the original author(s), and is not necessarily endorsed by or the

> > opinion of the Research Institute and/or the Parent

> Coalition.

> >

> >

> >

> >

> >

[Guest guest]

Jin,

Your post noted the NY clinic and its branch clinic in Texas. I am

currently trying to decide whether or not to see Dr. Goldberg in

California. I am limited by the fact that I live in Tennessee.

However, I am willing to do anything to help my son. If there are

any parents on the list whose children are seeing the Texas or New

York clinic docs, I would like to know your impressions and advice.

Does anyone know if they are following exactly the same protocals as

Dr. Goldberg?

> > > just fyi - there is a new group for discussion of

> > neuroimmune

> > > issues called 'neuroendocrineimmune'. It is an informal list

> for

> > > people interested in the discussion of all " aspects of

> > > NeuroEndocrineImmune issues and CNDS (Chronic

> > > NeuroendocrineimmuDysfunction Syndrome) -- whether specific to

> ASD

> > or

> > > not... " (from the homepage.) My understanding is that the

focus

> > will

> > > be on current research.

> > >

> > > fwiw,

> > > timary

> > >

> > >

> > >

> > >

> > >

> > > Responsibility for the content of this message lies strictly

with

> > > the original author(s), and is not necessarily endorsed by or

the

> > > opinion of the Research Institute and/or the Parent

> > Coalition.

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Jin,

Your post noted the NY clinic and its Texas branch. I am considering

flying to California to see Dr. Goldberg. The limitation is that I

live in Tennessee. However, I will do whatever I can to help my

son. If there are any parents on the list whose kids are being

treated by the New York or Texas clinics, I would like to know your

impressions and advice.

Does anyone know whether these clinics are exactly following Dr.

Goldberg's protocal? If not, how are they different?

> > > just fyi - there is a new group for discussion of

> > neuroimmune

> > > issues called 'neuroendocrineimmune'. It is an informal list

> for

> > > people interested in the discussion of all " aspects of

> > > NeuroEndocrineImmune issues and CNDS (Chronic

> > > NeuroendocrineimmuDysfunction Syndrome) -- whether specific to

> ASD

> > or

> > > not... " (from the homepage.) My understanding is that the

focus

> > will

> > > be on current research.

> > >

> > > fwiw,

> > > timary

> > >

> > >

> > >

> > >

> > >

> > > Responsibility for the content of this message lies strictly

with

> > > the original author(s), and is not necessarily endorsed by or

the

> > > opinion of the Research Institute and/or the Parent

> > Coalition.

> > >

> > >

> > >

> > >

> > >

[Guest guest]

It does help, thank you. It also now makes sense to me why some kids I

know show reactions to whatever limited foods they are currently eating.

Then they remove those few foods, replace with some others, that then,

also end up getting reactions on testing. So it seems, as you explained

it, that It is not necessarily that food in particular, per se, it's

basically an " allergic " system that can't deal with it, whatever it is,

and it needs to be addressed in conjunction with the other meds you

mentioned, otherwise, it seems like a vicious cycle (or really just a

secondary problem that will like never be fixed unless the root of the

problem is dealt with). Does Dr. G or other followers use common

allergy medications, ie Singulair, Zyrtec, or anything, or do these not

work to help an allergic system? It seems to me that if a system is

compromised immunologically, that there may be more than just allergies

to foods but also maybe other common household or environmental

allergens..Just a thought as I am trying to wrap my thoughts around

this. Anyway, thanks for your response..I also ask this because my

husband and I have had histories all of our lives with allergies (me

with mold & seasonal hay fever), my husband with outdoor allergies (like

cut grass, honeysuckle, cats, etc, etc - as a child his eyes would

literally swell shut).

Re: Re: neuroimmune research

Jin

I am glad your son is doing well under Dr Goldberg's care. Dr G is

definitely against adding in alternative medicine into the medication

routine for a child under his care.

If you are adding in alternative medicines you should make him aware

of this. But I will tell you he will tell you how strongly he feels that

there is no place for alternative meds in the form of megavitamins,

megaaminos, chelation, hyperbaric oxygen therapy.

In fact, you will note some of the flaming posts from the

moderator indicates promoting alternative meds on this board is not

tolerated.

I understand you feel very strongly about supporting Dr Bruce (Phd)

and alternative medicines, and I respect you as a person trying to help

your child, that really is wonderful.

I wish only the best to you and your child. Good Luck and God Bless

jinyang061629 <yanglou@...> wrote:

I went to a Dan doctor for about two year before I finally went to

Dr. Goldberg, because there is no main stream MD will take on his

approach, and many parents I spoke to did not think Dr. Goldberg's

protocol is a viable alternative. Dr. Globerg's protocol like it or

not, is also considered to be an alternative method to main stream

medicine which basically does nothing to help.

In you first post, because there were some terms in Dr. Bruce's

profile you do not like, you were basically tell people Dr. Bruce

must be some kind of Con doctor.

I think you are doing a dis-service to group members who can not fly

to see Dr. Goldberg, but may be able to get help from Dr. Bruce.

I also think that you are unfair to Dr. Bruce. Dr. Bruce is based in

Texas, and was working at NY Clinic. His son was a Dr Goldberg's

patient. There are parents in this group have been seeing him, or

planning to see him. Especially those live at north east and south

east corner of the country. I have not heard any complaint, but from

time to time, I have read that he helped some family greatly.

My suggestion for you is call him up, like you did with Dr. Goldberg,

do some more in depth research, before you form your opinions. You

can find his number from NY clinic:

http://www.nidsnnyclinic.org/id1.html

Just give you some background. My son is doing quite well under Dr.

Goldberg's care, he is a six grader, has more then one best friends,

on 98/99% nationally on math and reading, and had just took SAT for

gifted children, and just got Brown belts for TKD.

By the way, I went to a Dan Doctor for two years before we start see

Dr. Goldberg. Althrough I do not agree with Dan doctor's approach,

but I am not going to stand here and telling people that Dan doctors

are con doctors. There are kids helped greatly by Dan doctors.

Jin

> > just fyi - there is a new group for discussion of

> neuroimmune

> > issues called 'neuroendocrineimmune'. It is an informal list

for

> > people interested in the discussion of all " aspects of

> > NeuroEndocrineImmune issues and CNDS (Chronic

> > NeuroendocrineimmuDysfunction Syndrome) -- whether specific to

ASD

> or

> > not... " (from the homepage.) My understanding is that the focus

> will

> > be on current research.

> >

> > fwiw,

> > timary

> >

> >

> >

> >

> >

> > Responsibility for the content of this message lies strictly with

> > the original author(s), and is not necessarily endorsed by or the

> > opinion of the Research Institute and/or the Parent

> Coalition.

> >

> >

> >

> >

> >

[Guest guest]

,

You indicated that the individuals on the DAN lists think that Rx's

are terrible. Do you, or anyone else, have any idea why they would

hold such a position? Is it opposition to some specific med or just

some generalized naturalistic dislike for any Rx's?

> > > > just fyi - there is a new group for discussion of

> > > neuroimmune

> > > > issues called 'neuroendocrineimmune'. It is an informal

list

> > for

> > > > people interested in the discussion of all " aspects of

> > > > NeuroEndocrineImmune issues and CNDS (Chronic

> > > > NeuroendocrineimmuDysfunction Syndrome) -- whether

specific to

> > ASD

> > > or

> > > > not... " (from the homepage.) My understanding is that the

focus

> > > will

> > > > be on current research.

> > > >

> > > > fwiw,

> > > > timary

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > Responsibility for the content of this message lies

strictly

> with

> > > > the original author(s), and is not necessarily endorsed by

or

> the

> > > > opinion of the Research Institute and/or the

Parent

> > > Coalition.

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Well, probably the first thing is that the dan! individuals blame the

pharmaceutical companies and the vaccines for a lot of the damage done to their

children, and I'm sure that they didn't help them.

Just google any of the antivirals and side effects. There are many. Just as

there are many for most of the chelators used to rid the body of mercury/heavy

metals.

As I said, there are many sides to this. IMO, I truly believe that with ASD kids

there is a mix of viral AND metal issues. There is evidence of heavy metal

poisoning when they do autopsies of autistic individuals, more so than their

normal counterparts, sorry to be so morose, but is necessary to explain.

If the cure was as one-sided as people believe, ALL or most kids could be cured

by one protocol or the other. There are many causes of autism and there are

many cures.

Only by everyone putting their egos on hold for awhile and a free exchange of

ideas will we be able to help every child recover.

I wish you luck with your search. We searched diligently for about a year

before coming to our conclusion. I am happy to say ours is recovered, in a

regular preK, testing confirms her cognitive skills are above age level, teacher

confirms her social and attentional skills are at age level.

I truly wish this kind of result for every child, for I know how much it has

meant for mine. I really don't care how they get well, or who is right. If it

truly is about the children, then noone else will care either. I celebrate every

child's recovery, no matter the method.

Good luck to you and your child,

Re: neuroimmune research

,

You indicated that the individuals on the DAN lists think that Rx's

are terrible. Do you, or anyone else, have any idea why they would

hold such a position? Is it opposition to some specific med or just

some generalized naturalistic dislike for any Rx's?

> > > > just fyi - there is a new group for discussion of

> > > neuroimmune

> > > > issues called 'neuroendocrineimmune'. It is an informal

list

> > for

> > > > people interested in the discussion of all " aspects of

> > > > NeuroEndocrineImmune issues and CNDS (Chronic

> > > > NeuroendocrineimmuDysfunction Syndrome) -- whether

specific to

> > ASD

> > > or

> > > > not... " (from the homepage.) My understanding is that the

focus

> > > will

> > > > be on current research.

> > > >

> > > > fwiw,

> > > > timary

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > Responsibility for the content of this message lies

strictly

> with

> > > > the original author(s), and is not necessarily endorsed by

or

> the

> > > > opinion of the Research Institute and/or the

Parent

> > > Coalition.

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

,

I am glad to hear how well your daughter has done. I also

appreciate your explanation of the treatment debate.

If you do not mind my asking, what was your conclusion? Feel free

to respond of-list.

> > > > > just fyi - there is a new group for discussion

of

> > > > neuroimmune

> > > > > issues called 'neuroendocrineimmune'. It is an

informal

> list

> > > for

> > > > > people interested in the discussion of all " aspects of

> > > > > NeuroEndocrineImmune issues and CNDS (Chronic

> > > > > NeuroendocrineimmuDysfunction Syndrome) -- whether

> specific to

> > > ASD

> > > > or

> > > > > not... " (from the homepage.) My understanding is that

the

> focus

> > > > will

> > > > > be on current research.

> > > > >

> > > > > fwiw,

> > > > > timary

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > Responsibility for the content of this message lies

> strictly

> > with

> > > > > the original author(s), and is not necessarily

endorsed by

> or

> > the

> > > > > opinion of the Research Institute and/or the

> Parent

> > > > Coalition.

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

My son taks one Zyrtec tablet (presecribed ny Dr G) each night to help

reduce any allergic response. We have used Nasalchrom from time to time as

needed. If he's particularly stuffy - then we use a great childrens (no

colour/flavors) allergy/decongestant called Demazin - (not available in the

US) made by Schering in Aust. which Dr G really liked when I showed him the

box. I know he recommends benadryl for some kids. General rule with cold and

allergy meds is to be conscious that you are not adding more potential

allergens as in colours/fillers/flavours etc. These all help to reduce

stress on the child

R

Re: Re: neuroimmune research

Jin

I am glad your son is doing well under Dr Goldberg's care. Dr G is

definitely against adding in alternative medicine into the medication

routine for a child under his care.

If you are adding in alternative medicines you should make him aware

of this. But I will tell you he will tell you how strongly he feels that

there is no place for alternative meds in the form of megavitamins,

megaaminos, chelation, hyperbaric oxygen therapy.

In fact, you will note some of the flaming posts from the

moderator indicates promoting alternative meds on this board is not

tolerated.

I understand you feel very strongly about supporting Dr Bruce (Phd)

and alternative medicines, and I respect you as a person trying to help

your child, that really is wonderful.

I wish only the best to you and your child. Good Luck and God Bless

jinyang061629 <yanglou@...> wrote:

I went to a Dan doctor for about two year before I finally went to

Dr. Goldberg, because there is no main stream MD will take on his

approach, and many parents I spoke to did not think Dr. Goldberg's

protocol is a viable alternative. Dr. Globerg's protocol like it or

not, is also considered to be an alternative method to main stream

medicine which basically does nothing to help.

In you first post, because there were some terms in Dr. Bruce's

profile you do not like, you were basically tell people Dr. Bruce

must be some kind of Con doctor.

I think you are doing a dis-service to group members who can not fly

to see Dr. Goldberg, but may be able to get help from Dr. Bruce.

I also think that you are unfair to Dr. Bruce. Dr. Bruce is based in

Texas, and was working at NY Clinic. His son was a Dr Goldberg's

patient. There are parents in this group have been seeing him, or

planning to see him. Especially those live at north east and south

east corner of the country. I have not heard any complaint, but from

time to time, I have read that he helped some family greatly.

My suggestion for you is call him up, like you did with Dr. Goldberg,

do some more in depth research, before you form your opinions. You

can find his number from NY clinic:

http://www.nidsnnyclinic.org/id1.html

Just give you some background. My son is doing quite well under Dr.

Goldberg's care, he is a six grader, has more then one best friends,

on 98/99% nationally on math and reading, and had just took SAT for

gifted children, and just got Brown belts for TKD.

By the way, I went to a Dan Doctor for two years before we start see

Dr. Goldberg. Althrough I do not agree with Dan doctor's approach,

but I am not going to stand here and telling people that Dan doctors

are con doctors. There are kids helped greatly by Dan doctors.

Jin

> > just fyi - there is a new group for discussion of

> neuroimmune

> > issues called 'neuroendocrineimmune'. It is an informal list

for

> > people interested in the discussion of all " aspects of

> > NeuroEndocrineImmune issues and CNDS (Chronic

> > NeuroendocrineimmuDysfunction Syndrome) -- whether specific to

ASD

> or

> > not... " (from the homepage.) My understanding is that the focus

> will

> > be on current research.

> >

> > fwiw,

> > timary

> >

> >

> >

> >

> >

> > Responsibility for the content of this message lies strictly with

> > the original author(s), and is not necessarily endorsed by or the

> > opinion of the Research Institute and/or the Parent

> Coalition.

> >

> >

> >

> >

> >

[Guest guest]

Hello Im new to the whole autism information my son is 22 months DX

with severe autism he has stayed sick for a year, Gas diarrhea since

he was born etc. I know he has a immune deficency.28 doctor sick

visits in 6 months!I am interested in learning more from your

group.My son was diagnosed three weeks ago and the first thing I did

was spend hundreds of dollars one of my utilites will most likely be

shut off because of it.Two hundred of which I sent to a holistic DAN

Doctor who has two offices one a eye clinic and the other called

optimal healing I know because I checked her out on the dan web site

and they sent me to her web site my first payment they said they

never recieved so I drove almost across state atleast 6 hour drive

with 3 kids and a old car had to get a motel room and payed again in

person and the receptionist said about the paper work that oh I dont

know who that came from ( actually it came from the holistic doctors

other office) then she told me good luck on getting your money back

on that one.I was wondering what is the other protocol.We just dont

have the money to keep wasting on a scam or someone taking advantage

of my desperation we have three children and are below the poverty

line

I called her back yesterday and asked about the test that she was

supposed to mail me to take the specimens myself and mail to another

lab and she said the doctor hasnt viewed my paper work yet. If this

lady ripps me off Im reporting her and if I dont recieve my money

back from her other office that I was told good luck getting your

money back there im calling the attorney general its bad enough to

watch my son suffer and go through everything hes been through to

have someone take advantage just cant out it into words

> > > just fyi - there is a new group for discussion of

> > neuroimmune

> > > issues called 'neuroendocrineimmune'. It is an informal list

> for

> > > people interested in the discussion of all " aspects of

> > > NeuroEndocrineImmune issues and CNDS (Chronic

> > > NeuroendocrineimmuDysfunction Syndrome) -- whether specific to

> ASD

> > or

> > > not... " (from the homepage.) My understanding is that the

focus

> > will

> > > be on current research.

> > >

> > > fwiw,

> > > timary

> > >

> > >

> > >

> > >

> > >

> > > Responsibility for the content of this message lies strictly

with

> > > the original author(s), and is not necessarily endorsed by or

the

> > > opinion of the Research Institute and/or the Parent

> > Coalition.

> > >

> > >

> > >

> > >

> > >

[Guest guest]

In a message dated 2/22/2006 8:40:40 AM Central Standard Time,

thecolemans4@... writes:

<<In my experience with DAN, it is basically a natural

dislike for pharmaceuticals based on the alternative

/holistic view that you treat underlying illness

naturally to heal. >>

From what I've seen and experienced, the pharmaceuticals the DAN folks tend

to be negative about are SSRIs, stimulants and other drugs typically prescribed

by psychiatrists for people with autism and ADHD. The main arguement I've

read is that these drugs often mask symptoms rather than treating the underlying

cause and have many potential negative side effects.

DAN doctors often prescribe RX antifungals and many more are now prescribing

RX antivirals. They tend to lean more towards alternative treatments rather

than antibiotics, except when absolutely needed, because of the concern of

killing off good bacteria that helps us fight off infection and digest our food.

My biggest concern with the DAN folks is the tendency to jump on the

bandwagon of every new treatment that some doctor says is helping kids. It's

pretty

common to suddenly see a doctor no one has ever heard of referred to as " the

expert " in treating certain conditions common to the autistic population. Over

the years, I've seen a lot of these treatments come and go with only a few

being kept in their protocol as effective long-term.

Gaylen

[Guest guest]

,

To add to what said, my boys are with Dr. Goldberg and between them

they take DAllergy Jr., Allegra (one takes one, one takes the other), and

Nasacort and Astelin Nasal Sprays (they are both on both of these).

Keeping on top of allergies is just one more way to help cool the immune

system down.

Caroline

> From: <rmwilson@...>

> Organization: MSC

> Reply-< >

> Date: Wed, 22 Feb 2006 13:50:17 +0800

> < >

> Subject: RE: Re: neuroimmune research

>

> My son taks one Zyrtec tablet (presecribed ny Dr G) each night to help

> reduce any allergic response. We have used Nasalchrom from time to time as

> needed. If he's particularly stuffy - then we use a great childrens (no

> colour/flavors) allergy/decongestant called Demazin - (not available in the

> US) made by Schering in Aust. which Dr G really liked when I showed him the

> box. I know he recommends benadryl for some kids. General rule with cold and

> allergy meds is to be conscious that you are not adding more potential

> allergens as in colours/fillers/flavours etc. These all help to reduce

> stress on the child

> R

[Guest guest]

Hi ...

In my experience with DAN, it is basically a natural

dislike for pharmaceuticals based on the alternative

/holistic view that you treat underlying illness

naturally to heal.

Unfortunately, when the immune system is dysfunctional

and fighting off an illness, the immune system will

purposely disable the absorption and metabolism of

many things in order to fight infection. By

supplementing or megadosing the vitamins and other

things, you can literally be feeding the infection

that is being fought. Otherwise, you are likely

giving many supplements that are just going thru the

body like water until the infection is addressed.

Like my taking over 100 mg of iron per day for almost

two years but increasingly becoming more anemic while

dealing with a chronic strep infection, and until

longer courses of antibiotics and antifungals were

rxd, nothing would bring my iron up. Perhaps the

kids that do well from the supplementation (?) have

already overcome their infections? But you can

sometimes see improvements from a supplement even

while it is doing something negative to the immune

system, which I witnessed happen with my son and cod

liver oil. That can be a misleading 'positive',

because it is the overall longterm cooling off of the

immune system that the protocol is targeting.

Also, when the immune system is dysfunctional, the

proper metabolism or elimination of other toxins like

metals, etc, is likewise disabled, hence the higher

levels of mercury etc in our kids. Again, if the

underlying illness can be treated and the body begins

it's own cleansing, it can clear out these metals far

more safely and efficiently than by chelating. Some

parents have witnessed this themselves on the

protocol.

I believe in alternative medicine and wholesome diets

for healthy people. We did lots of alternative

medicine when I was a child... I spent many years

looking for that key to my health, and I finally

understand now why alternative medicine and vitamins

and supplements had always ended up making me feel

worse after a while rather than better. They were

setting my system off worse than it was before I

started.

has more than 20 years of research behind it in

the Chronic Fatigue Syndrome groups. Alternative

medicine and supplements, etc, have already been

openly evaluated in that group, and many of DAN!

therapies offered are a recycling of ideas already

used in other disorders as well. You'll find the same

positive and negative testimony in other illnesses,

but most don't hold. However, diet control, good

health habits, and treating illness does withstand the

test for many, but not everyone. It is a primary

reason why immune modulators are so desired, and some

are already in stages of trials with other disorders,

just not for children, who usually get access to a

medicine last (for obvious safety reasons).

--- <richard@...> wrote:

> ,

>

> You indicated that the individuals on the DAN lists

> think that Rx's

> are terrible. Do you, or anyone else, have any idea

> why they would

> hold such a position? Is it opposition to some

> specific med or just

> some generalized naturalistic dislike for any Rx's?

>

>

>

__________________________________________________

[Guest guest]

- I read that your daughter is doing well in

pre-K & is at or above " typical " levels... what

approach worked for her? Can you share more with me

about her recovery?

Thanks!

--- Cochran <Ladyshrink111@...>

wrote:

> Well, probably the first thing is that the dan!

> individuals blame the pharmaceutical companies and

> the vaccines for a lot of the damage done to their

> children, and I'm sure that they didn't help them.

>

> Just google any of the antivirals and side effects.

> There are many. Just as there are many for most of

> the chelators used to rid the body of mercury/heavy

> metals.

>

> As I said, there are many sides to this. IMO, I

> truly believe that with ASD kids there is a mix of

> viral AND metal issues. There is evidence of heavy

> metal poisoning when they do autopsies of autistic

> individuals, more so than their normal counterparts,

> sorry to be so morose, but is necessary to explain.

>

> If the cure was as one-sided as people believe, ALL

> or most kids could be cured by one protocol or the

> other. There are many causes of autism and there

> are many cures.

>

> Only by everyone putting their egos on hold for

> awhile and a free exchange of ideas will we be able

> to help every child recover.

>

> I wish you luck with your search. We searched

> diligently for about a year before coming to our

> conclusion. I am happy to say ours is recovered, in

> a regular preK, testing confirms her cognitive

> skills are above age level, teacher confirms her

> social and attentional skills are at age level.

>

> I truly wish this kind of result for every child,

> for I know how much it has meant for mine. I really

> don't care how they get well, or who is right. If it

> truly is about the children, then noone else will

> care either. I celebrate every child's recovery, no

> matter the method.

>

> Good luck to you and your child,

>

> Re: neuroimmune research

> >

> > ,

> >

> > What Jin was trying to tell you, and you

> didn't seem to get is

> that

> > Dr. is not a PHD. He is an MD. He

> doesn't

> > practice " alternative " medicines, other than

> to the extent that

>

> > is " alternative " medicine. Those

> moderators who have been

> so

> > adamently oppposed to chelation all these

> years are the same

> people

> > you're now accusing of supporting it. I'm not

> sure how you

> became so

> > misinformed.

> >

> > And lastly, Jin is not using alternative

> treatments with her

> son.

> > She sees Dr. Goldberg & has for years. Her

> son is doing well

> under

> > his care. She was just trying to explain to

> you that your

> original

> > post was way off base.

> >

> >

> >

> > >

> > > I am glad your son is doing well under Dr

> Goldberg's

=== message truncated ===

__________________________________________________

[Guest guest]

,

We started my boys with the New York clinic almost 2 years ago, but

swapped to Texas when the clinic opened there. We're in Alabama, so

it's closer for us. We're very pleased with the progress the boys

have made. My oldest responded immediately and is doing wonderful.

He's in a regular 1st grade class, with no aides or support. My

younger son has not progressed as quickly as we'd like, but he was a

lotter sicker than his brother when we started. He has made

substantial improvements and we feel we're headed in the right

direction. Feel free to email me off line if you have any questions

I can answer.

> > > > just fyi - there is a new group for discussion of

> > > neuroimmune

> > > > issues called 'neuroendocrineimmune'. It is an informal

list

> > for

> > > > people interested in the discussion of all " aspects of

> > > > NeuroEndocrineImmune issues and CNDS (Chronic

> > > > NeuroendocrineimmuDysfunction Syndrome) -- whether specific

to

> > ASD

> > > or

> > > > not... " (from the homepage.) My understanding is that the

> focus

> > > will

> > > > be on current research.

> > > >

> > > > fwiw,

> > > > timary

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > Responsibility for the content of this message lies strictly

> with

> > > > the original author(s), and is not necessarily endorsed by or

> the

> > > > opinion of the Research Institute and/or the Parent

> > > Coalition.

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Well said, Gaylen, and a problem if you are a dr worshipper, not you, per se.

Anything anyone says should be thoroughly checked out. One of my favorite quotes

and I don't even know who says it is:

" In God we trust, all others bring data "

From: Googahly@...

Sent: Wednesday, February 22, 2006 12:24 PM

Subject: Re: Re: neuroimmune research

In a message dated 2/22/2006 8:40:40 AM Central Standard Time,

thecolemans4@... writes:

<<In my experience with DAN, it is basically a natural

dislike for pharmaceuticals based on the alternative

/holistic view that you treat underlying illness

naturally to heal. >>

From what I've seen and experienced, the pharmaceuticals the DAN folks tend

to be negative about are SSRIs, stimulants and other drugs typically

prescribed

by psychiatrists for people with autism and ADHD. The main arguement I've

read is that these drugs often mask symptoms rather than treating the

underlying

cause and have many potential negative side effects.

DAN doctors often prescribe RX antifungals and many more are now prescribing

RX antivirals. They tend to lean more towards alternative treatments rather

than antibiotics, except when absolutely needed, because of the concern of

killing off good bacteria that helps us fight off infection and digest our

food.

My biggest concern with the DAN folks is the tendency to jump on the

bandwagon of every new treatment that some doctor says is helping kids. It's

pretty

common to suddenly see a doctor no one has ever heard of referred to as " the

expert " in treating certain conditions common to the autistic population.

Over

the years, I've seen a lot of these treatments come and go with only a few

being kept in their protocol as effective long-term.

Gaylen

[Guest guest]

To add to this, even though my son doesn't receive care from a DAN, I

have consulted two and know numerous parents who use some. And what is

interesting is that many of the " bigger-name " DAN docs that have been

around for awhile and are on the DAN think tank do prescribe meds. In

fact, one of them I talked to prescribes all sorts of things, including

SSRIs, rispederal, anti-convulsants, epileptics drugs, antibiotics,

anti-fungals, allergy meds, actos, Nameda, (lots of off-label things)

and lets not forget that chelation creams are RX. I think I have heard

of him prescribing just about everything other than Ritalin, (which he

may, just haven't heard it). He tries the other stuff first and when it

generally doesn't recover the child, he resorts to meds, or uses them in

conjunction with the " natural " stuff. I get a sense from many parents

on some of the other boards that they are just either not aware that

many of these Big-Dog DAN doctors do use meds or that they just don't

want to advertise it. I just didn't feel comfortable with the DAN

approach because I felt like it was all over the place, but I am

perfectly aware that it may be the doctors that I consulted with I just

ultimately didn't trust their judgment. But it always makes me chuckle

a little when I hear some parents carry on and on about the natural

approach when I first hand know that some of these doctors (some of the

ones responsible for the DAN protocol) are using RXs and a lot of them.

The biggest difference from what I can tell is that sometimes there

seems to be no rhyme or reason for it.

Re: Re: neuroimmune research

In a message dated 2/22/2006 8:40:40 AM Central Standard Time,

thecolemans4@... writes:

<<In my experience with DAN, it is basically a natural

dislike for pharmaceuticals based on the alternative

/holistic view that you treat underlying illness

naturally to heal. >>

From what I've seen and experienced, the pharmaceuticals the DAN folks

tend

to be negative about are SSRIs, stimulants and other drugs typically

prescribed

by psychiatrists for people with autism and ADHD. The main arguement

I've

read is that these drugs often mask symptoms rather than treating the

underlying

cause and have many potential negative side effects.

DAN doctors often prescribe RX antifungals and many more are now

prescribing

RX antivirals. They tend to lean more towards alternative treatments

rather

than antibiotics, except when absolutely needed, because of the concern

of

killing off good bacteria that helps us fight off infection and digest

our food.

My biggest concern with the DAN folks is the tendency to jump on the

bandwagon of every new treatment that some doctor says is helping kids.

It's pretty

common to suddenly see a doctor no one has ever heard of referred to as

" the

expert " in treating certain conditions common to the autistic

population. Over

the years, I've seen a lot of these treatments come and go with only a

few

being kept in their protocol as effective long-term.

Gaylen

[Guest guest]

, I read the post to & I would be

interested in hearing more of your sons story & how

has helped. Im looking into this for my 2 1/2

year old son who was diagnosed with autism.

Thanks-

--- jj2littletrojans <aandlbryant@...> wrote:

> ,

>

> We started my boys with the New York clinic almost 2

> years ago, but

> swapped to Texas when the clinic opened there.

> We're in Alabama, so

> it's closer for us. We're very pleased with the

> progress the boys

> have made. My oldest responded immediately and is

> doing wonderful.

> He's in a regular 1st grade class, with no aides or

> support. My

> younger son has not progressed as quickly as we'd

> like, but he was a

> lotter sicker than his brother when we started. He

> has made

> substantial improvements and we feel we're headed in

> the right

> direction. Feel free to email me off line if you

> have any questions

> I can answer.

>

>

>

>

>

>

>

>

=== message truncated ===

__________________________________________________

[Guest guest]

My two cents on the diet issues is that it took a long time for me to

notice any difference. It was very difficult to stick to any diet when

it didn't seem to help. But now after four year with Dr, if my son gets

an offending food, man he is whacko and looks like someone on an acid

trip or something, probably more like LSD. For example the natural

peanut butter incident the other night. Milk is still the biggest

offender and he didn't show much of a reaction to it on his food panel.

Dr G just seems to have an innate sense about this stuff. My son showed

the most reaction to wheat and gluten. Dr. G has repeatedly told me he

does not think he is a true celiac, I can go GFCF if I want to but it

doesn't think it's necessary. He does not react to wheat flour like

other things, soy is real bad for him too, almost identical to milk. I

did try GFCF for awhile, boy it was extrememly difficult for me, with my

son in school and having to be deprived of absolutely everything anyone

brought in. Just letting everyone know about milk is alot easier. I

bring stuff for him at parties. But I think it helps him feel a little

less like a freak and this is an important thing to consider also. Many

people are lactose intolerant. Jerri

[Guest guest]

Thanks for the reply. Interestingly as I dabbled with the diet in the

past, my son also reacted more poorly to soy than anything else. He

doesn't drink any kind of milk and hasn't since he was two, he hates it.

I have heard the soy thing from MANY people. I wonder what the deal is

with the soy reactions? I knew one little girl whose parents may have

linked soy to absence seizures and once it was removed it went away.

They tested it again and it looked like soy was the culprit, she was

likely predisposed to subclinical seizures and this pushed her over the

edge. They looked into this a little and apparently SOY has a

tremendous amount of glutamates in it, and high/uncontrolled glutamate

is what causes seizures which can be sub-clinical. Soy didn't make my

son have seizures but it could just be that I removed quick enough to

stop a glutamate problem from building up over time. Who knows? It is

interesting though.

Re: neuroimmune research

My two cents on the diet issues is that it took a long time for me to

notice any difference. It was very difficult to stick to any diet when

it didn't seem to help. But now after four year with Dr, if my son gets

an offending food, man he is whacko and looks like someone on an acid

trip or something, probably more like LSD. For example the natural

peanut butter incident the other night. Milk is still the biggest

offender and he didn't show much of a reaction to it on his food panel.

Dr G just seems to have an innate sense about this stuff. My son showed

the most reaction to wheat and gluten. Dr. G has repeatedly told me he

does not think he is a true celiac, I can go GFCF if I want to but it

doesn't think it's necessary. He does not react to wheat flour like

other things, soy is real bad for him too, almost identical to milk. I

did try GFCF for awhile, boy it was extrememly difficult for me, with my

son in school and having to be deprived of absolutely everything anyone

brought in. Just letting everyone know about milk is alot easier. I

bring stuff for him at parties. But I think it helps him feel a little

less like a freak and this is an important thing to consider also. Many

people are lactose intolerant. Jerri

Responsibility for the content of this message lies strictly with

the original author(s), and is not necessarily endorsed by or the

opinion of the Research Institute and/or the Parent Coalition.

[Guest guest]

Yes, that is true, , and kind of in line with my beliefs. And yours. The

diet is considered alternative medicine by many other mds, they would chuckle at

the idea that diet could make any difference. But we know it has made a world of

difference to a lot of kids (not mine, btw). We did a trial on the diet, she

actually got worse, we took her off the diet and never looked back-remember

nothing is for every kid.

In line with my way of thinking that all agents, vitamins, minerals, rx drugs

are chemicals. Your body doesn't know the difference between most vitamins

minerals and chemicals.

Also in line with my way of thinking use the least restrictive agents first, but

if no improvement, then move on to something that does work. No need for a child

to suffer needlessly.

I think most parents know some dan! drs (most of the time these are former child

psychiatrists who turned dan!) will use rx medication, but a lot of parents will

not. I think that is a mistake if after a trial of something natural doesn't

work, rx medication is a good weapon to have in your arsenol.

I also agree that a lot of the dan! stuff is all over the boards and will even

say that I would not go to about 90% of the dan drs. I am mostly, with a few

exceptions, anti-dan, I think the majority of them are dangerous and don't know

what they are doing.

So, you see, much more in common than you might think :-)

Re: Re: neuroimmune research

In a message dated 2/22/2006 8:40:40 AM Central Standard Time,

thecolemans4@... writes:

<<In my experience with DAN, it is basically a natural

dislike for pharmaceuticals based on the alternative

/holistic view that you treat underlying illness

naturally to heal. >>

From what I've seen and experienced, the pharmaceuticals the DAN folks

tend

to be negative about are SSRIs, stimulants and other drugs typically

prescribed

by psychiatrists for people with autism and ADHD. The main arguement

I've

read is that these drugs often mask symptoms rather than treating the

underlying

cause and have many potential negative side effects.

DAN doctors often prescribe RX antifungals and many more are now

prescribing

RX antivirals. They tend to lean more towards alternative treatments

rather

than antibiotics, except when absolutely needed, because of the concern

of

killing off good bacteria that helps us fight off infection and digest

our food.

My biggest concern with the DAN folks is the tendency to jump on the

bandwagon of every new treatment that some doctor says is helping kids.

It's pretty

common to suddenly see a doctor no one has ever heard of referred to as

" the

expert " in treating certain conditions common to the autistic

population. Over

the years, I've seen a lot of these treatments come and go with only a

few

being kept in their protocol as effective long-term.

Gaylen

[Guest guest]

Hi ,

We have never done a Spect Scan on my son. Perhaps Dr. G would like one,

but we are from Canada and would have no insurance to cover the cost. The

trip(s) to California and the monthly phone consults seem to be enough for

now. He understands that and has never pushed the issue. That being said,

my son has some very obvious immune dysfunction according to his bloodwork.

Dr. G is able to use his clinical experience and make the right choices for

my son without the Spect Scan, so far. I would like to get one to have a

" picture " of what is really going on, and will consider it our next trip

out.

That however, hasn't been the basis for not using an SSRI's for my son.

Basically my son has had many periods of complete clarity and we see

zoniness and fogginess come more from food infractions and I have been able

to self correct and brighten him up with dietary intervention. My son's IgE

was the highest that Dr. G ever saw - in the 3000's with a RR of 0-60. That

being said, allergies and food intolerance's remain my son's biggest

hurdle...We used to have a food slip and the zoniness would return. As he

has become healthier, we see less behaviour from food infractions, but it

still shows in his IgE. While the SSRI's can help a great deal with

brightness, connectedness, focus and zoniness, these have never been my

son's problems, on a tight diet that is.

Hope this helps. It is a big decision and one that I have never

regretted...not for one day. Best of luck with your journey.

Lori

/was: /was:Re: neuroimmune research

Lori,

Whay are BayGam injections?

It is encouraging to hear your son is doing so well. If you don't

mind me asking, did Dr. G do a spect scan and not recommend SSRIs?

> > >

> > > :

> > >

> > > Well, it is only partly . But is pretty

> restrictive, not

> > saying that in a bad way, just saying that means

> antiviral and

> > psychotropic meds and a diet. If I am wrong, please

correct

> me.

> > >

> > > I am also uncomfortable sharing anymore publicly,

although,

> as I

> > stated, the list has been very kind, but the protocol I

used in

> > recovering our girl goes beyond , although I think

> has an

> > important contribution to make and many are starting to

listen.

> > >

> > > I got no less than 6 private emails asking me for

> information and

> > I don't have the time or the energy to reply individually

> about the

> > same issues.

> > >

> > > If those of you can figure out a way for all of us to get

> together

> > so I won't be needlessly repeating myself, I would be game.

> Very

> > technophobic here, also very basic computer skills.

> > >

> > >

> > > Re: /was:Re: neuroimmune

research

> > >

> > >

> > > ,

> > > I can only speak for myself but I would like to see the

> answers

> > to s

> > > questions on-list. I am not offended by information.

Many

> > times others ask

> > > questions that I need answers to also. Thanks for

sharing

> this

> > healthy

> > > discussion. Anything that might help our kids and it

is

>

> > related. N.

> > >

> > >

> > >

[Guest guest]

I seem to always chime in on these posts because I support the notion that one

size does not fit all regarding the kids affected by this bizarre ASD epidemic.

Ray

Re: Re: neuroimmune research

Jin

I am glad your son is doing well under Dr Goldberg's care. Dr G is

definitely against adding in alternative medicine into the medication

routine for a child under his care.

If you are adding in alternative medicines you should make him aware

of this. But I will tell you he will tell you how strongly he feels that

there is no place for alternative meds in the form of megavitamins,

megaaminos, chelation, hyperbaric oxygen therapy.

In fact, you will note some of the flaming posts from the

moderator indicates promoting alternative meds on this board is not

tolerated.

I understand you feel very strongly about supporting Dr Bruce (Phd)

and alternative medicines, and I respect you as a person trying to help

your child, that really is wonderful.

I wish only the best to you and your child. Good Luck and God Bless

jinyang061629 <yanglou@...> wrote:

I went to a Dan doctor for about two year before I finally went to

Dr. Goldberg, because there is no main stream MD will take on his

approach, and many parents I spoke to did not think Dr. Goldberg's

protocol is a viable alternative. Dr. Globerg's protocol like it or

not, is also considered to be an alternative method to main stream

medicine which basically does nothing to help.

In you first post, because there were some terms in Dr. Bruce's

profile you do not like, you were basically tell people Dr. Bruce

must be some kind of Con doctor.

I think you are doing a dis-service to group members who can not fly

to see Dr. Goldberg, but may be able to get help from Dr. Bruce.

I also think that you are unfair to Dr. Bruce. Dr. Bruce is based in

Texas, and was working at NY Clinic. His son was a Dr Goldberg's

patient. There are parents in this group have been seeing him, or

planning to see him. Especially those live at north east and south

east corner of the country. I have not heard any complaint, but from

time to time, I have read that he helped some family greatly.

My suggestion for you is call him up, like you did with Dr. Goldberg,

do some more in depth research, before you form your opinions. You

can find his number from NY clinic:

http://www.nidsnnyclinic.org/id1.html

Just give you some background. My son is doing quite well under Dr.

Goldberg's care, he is a six grader, has more then one best friends,

on 98/99% nationally on math and reading, and had just took SAT for

gifted children, and just got Brown belts for TKD.

By the way, I went to a Dan Doctor for two years before we start see

Dr. Goldberg. Althrough I do not agree with Dan doctor's approach,

but I am not going to stand here and telling people that Dan doctors

are con doctors. There are kids helped greatly by Dan doctors.

Jin

> > just fyi - there is a new group for discussion of

> neuroimmune

> > issues called 'neuroendocrineimmune'. It is an informal list

for

> > people interested in the discussion of all " aspects of

> > NeuroEndocrineImmune issues and CNDS (Chronic

> > NeuroendocrineimmuDysfunction Syndrome) -- whether specific to

ASD

> or

> > not... " (from the homepage.) My understanding is that the focus

> will

> > be on current research.

> >

> > fwiw,

> > timary

> >

> >

> >

> >

> >

> > Responsibility for the content of this message lies strictly with

> > the original author(s), and is not necessarily endorsed by or the

> > opinion of the Research Institute and/or the Parent

> Coalition.

> >

> >

> >

> >

> >

[Guest guest]

Dixie

I do not know what type of doctor your child sees on a regular

basis, but as you have found out there are many out there with

treatment protocols that are not payable through normal medical

insurance. In the files section of this list there is a list of

recommended labs to do that help detect immune system problems. If

you could get your regular doctor to run these tests and maybe get a

specialist (like an immunologist or rheumotologist)involved you may

be able to get the right treatment for your son. Many people have

been successful in finding doctors that understand the problems

strep, viruses, and yeast can cause. Hope this helps.

> > > > just fyi - there is a new group for discussion of

> > > neuroimmune

> > > > issues called 'neuroendocrineimmune'. It is an informal

list

> > for

> > > > people interested in the discussion of all " aspects of

> > > > NeuroEndocrineImmune issues and CNDS (Chronic

> > > > NeuroendocrineimmuDysfunction Syndrome) -- whether specific

to

> > ASD

> > > or

> > > > not... " (from the homepage.) My understanding is that the

> focus

> > > will

> > > > be on current research.

> > > >

> > > > fwiw,

> > > > timary

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > Responsibility for the content of this message lies strictly

> with

> > > > the original author(s), and is not necessarily endorsed by

or

> the

> > > > opinion of the Research Institute and/or the

Parent

> > > Coalition.

> > > >

> > > >

> > > >

> > > >

> > > >