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Marc Share, Executive Director, NIDS Coalition
"TITLE:
"Autism: the Neuro Immune Dysfunction Connection".
Tuesday, February 25st
at
7 p.m. (Eastern), Note portions of the text have been edited for spelling and
grammatical errors, while other text with errors was left in tact in the context of the
chat.
Sunny
{public msg} Hello and Welcome to our talkAutism Specialty Chat. If you have a question
for our Host Speaker's, "Autism: the Neuro Immune Dysfunction Connection - Marc
Share, Executive Director, NIDS Coalition. Just type a "?" in the room. The
names will be taken in order received. Hold your questions until you are cued by the
Moderator. Also, Please keep chit chat down to a minimal. Feel free to speak up when The
Host addresses your question, and say, "Thanks" when you are satisfied so that
Moderator knows to move on to the next person. Thank You and enjoy your stay!
Moderator {public msg} Marc would you like to start with a little information about
yourself?
Marc {public msg} I am Marc Share, Executive Director of the Neuro Immune Dysfunction
Syndromes Research Institute & Parent Coalition
Marc {public msg} The NID, S-RI is an organization dedicated to supporting research into
NIDS and it's links to Autism, ADD/ADHD, CFIDS, PDD and many other developmental disorders
Ron {public msg} ?
Marc {public msg} The NIDSS hypothesis states that the Cognative and developmental issues
that many of our children face are the result of an immune systm dysfunction while causes
brain blood issues
Marc {public msg} The immune system imbalance causes blood flow issues in the areas of the
brain which deal with Speech & Language, Social development, etc
Marc {public msg} As for me , I am the father of a 7 year old boy diagnosed with Autism in
1999. We started seeing Dr. Goldberg in November 1999 and he is doing very well!
Mommyo {public msg} ?
Moderator {public msg} Ron you have a question
Ron {public msg} Why is it so important to consider autism as a neuro-immune dysfunction?
How is it different than what a DAN doctor believes?
Marc {public msg} The NIDS hypothesis treats the entire Neuro endrocine immune system. By
bringing the immune system into balance, blood flow will be restored to the critical parts
of the brain and normal function can return
Wawa {public msg} ?
Marc {public msg} While nutrition can be a critical part of the treatment, it will not
always treat the particular isses that could be present in the immune dysfunction
Ron {public msg} thanks Marc!
Moderator {public msg} Mommyo You have the next question
Mommyo {public msg} I was on your website and could not find your do's and don'ts list.
Can you tell me specifically where to find it? Everything I was told about the glutten and
CF
Mommyo {public msg} was that you had to be pure on it
Mommyo {public msg} On your site you beleive differently
Marc {public msg} The NIDS protocol makes use of currently available medications to treat
certain aspects of the dysfunction. Anti-virals for viral, Anti-fungal's, etc. The idea is
to 'cool down' the immune system.
Mommyo {public msg} Does this help with the allergies
Marc {public msg} Give me second and I will get you the URL for that section. The Do's and
Don'ts provide a little more lee-way than the strict GFCF diet
Mommyo {public msg} i LOVE THAT
Ron {public msg} that's a blessing!
Marc {action} . o O ( By 'cooling down' the immune system, the overreaction to allergens
is lessen )
Mommyo {public msg} Does Insurance cover alot of the test to be part of the NIDS protocol
Marc {public msg} The URL for the diet is http://www.NIDS.net/diet.htm
Marc {public msg} Yes , Insurance will cover many of the tests
Mommyo {public msg} Thanks I'll give someone else a chance to ask questions now
Moderator {public msg} Wawa you are next
Wawa {public msg} Two questions. #1, how do you know the system is out of balance? #2, how
do you restore it to balance?
Marc {public msg} In answer to the allergy question! WHen you cool down the immune system,
the reactions to allergens are dram
Marc {public msg} tically decreased
Marc {public msg} Most parents will give similar history about their childs health
problems. However, there are is a blood workup to determine the 'shape' of the immune
system
Marc {public msg} By identifying the parts of the immune system that are out of balance,
thoses areas can be treated directly and brought under control
Marc {public msg} The blood work up can be located at www.NIDS.net/labtests.htm
Ron {public msg} ?
Marc {public msg} Anti-Virals for the HHV6 that we see alot of. Anti-fungals for
yeast/Candida,
Marc {public msg} Please welcome Cheryl to the chat. Cheryl is one of our parent advocates
and has an amazing understanding about the blood workup, etc. If there is anything I can't
answer, I might throw it to her
Moderator {public msg} Hello cheryl Welcome
Sunny {public msg} hi cheryl
Mommyo {public msg} Hi Cheryl, WELCOME!
Moderator {public msg} Ron you have a question
Cheryl1b {public msg} Thanks, glad to help if I can.
Ron {public msg} What physical changes does one see when our kids get in balance? How does
one know this is working? And can you share the differences between the DAN protocol and
the NIDS protocol (I'm pretty slow)
Marc {public msg} THe 'cooling down' process can be slow and steady. It requires patience
and determination. Often one will see die -off as the immune system is normalized
enjoy
Marc {public msg} From a brain function standpoint, the NeuroSpect scans will show some
dramatic changes. NeuroSpect scene show actual blood flow to certain parts of the brain.
One the immune system starts to normalize, increase blood flow can be seen easily
Marc {public msg} From an outward, health standpoint- the reduction of the
Gastro-intestinal issues, Elimination of the chronic ear infections, reduction of
overreaction to foods and other allergens
Marc {public msg} From a behavior standpoint, increased speech and language. Better body
awareness and balance. Increase attention and eye contact
Marc {public msg} Because of my wife's autoimmune issues NIDS made so much sense. I don't
have hands-on experience with DAN, however, I think Cheryl can provide some goog
background! Cheryl>?
Ron {public msg} getting a neurospect scan traumatic at all for our kids?
Cheryl1b {public msg} I think the key is addressing the current issues, rather than
focusing on the trigger.
Cheryl1b {public msg} Once the immune system is malfunctioning there are many things that
can take advantage of the dysfunction.
Mommyo {public msg} ?
Marc {public msg} I think the scans can be tough for some kids but if it is too difficult,
they can be sedated, if necessary
Ron {public msg} thanks!
Moderator {public msg} Mommyo you have a question
Mommyo {public msg} Do you see a common theme in the results of the testing in the autism
population? What tends to be the biggest problem arising?
Andrew {public msg} ?
Marc {public msg} If metals are suspect, testing and chelation should be done at a
Children's Hospital with experience in metals toxicity
Ron {public msg} NIDS does believe in chelation?
Cheryl1b {public msg} What research is showing is that immune activation has effects on
metabolic issues. Once you settle things down the body will take care of the rest.
Cheryl1b {public msg} Much better than anything we can do
Marc {public msg} No Let me be clear. My wording was not clear. The NIDS protocol does not
included chelation as part of treatment.
Ron {public msg} gotcha, Marc... and I believe DAN has added Dr. Holmes to suggest
chelation in some cases
Mommyo {public msg} So the results of testing is showing that most of our kids have immune
activation problems?
Ron {public msg} her and Dr. Caves ideas on chelation, I should say
Cheryl1b {public msg} I should have said immune dysregulation....There are parts over and
under active.
Marc {public msg} The only time any sort of chelating agent should be used is when the
test is verified by a Children's Hospital and the chelation is done there. It is not part
of the NIDS treatment protocol. At that point the 'Chelation' is part of the Hospital's
treatment protocol and is unrelated to NIDS
Mommyo {public msg} Thanks
Moderator {public msg} Andrew you have a question you would like to ask
Andrew {public msg} I am in New Jersey
Andrew {public msg} Are there any NIDS experienced doctors on the East Coast?
Cynthia_and_two_boys {public msg} ?
Marc {public msg} Ron, to finish-NIDS is medical based and requires an MD to admínister
Marc {public msg} Andrew, we have a clinic in upstate NY
Andrew {public msg} OK, where can I find more information about it?
Marc {public msg} We hope to start expanding physician training very soon. As I said at
the outset, we will be having a National Video Conference focused on medical profs this su
mmer
Andrew {public msg} Great, thanks.
Marc {public msg} Andrew, visit the NIDS site at www.NIDS.net or join the NIDS Yahoo Group
at www.groups.yahoo/NIDS
Moderator {public msg} Cynthia_and_two_boys you have a question
Cynthia_and_two_boys {public msg} What is the biggest obstacle in spreading the info on
the NIDS hypothesis and having all of the doctors working (or not working) on treating
'autism' get on board with administering treatment for this syndrome? What's holding up
mainstream's acceptance of this treatment plan?
Cynthia_and_two_boys {public msg} besides Dr. Goldberg having an overwhelming patient load
and being spread thin as it already is, of course! :)
Marc {public msg} Traditionally, Autism has been viewed as a developmental disability as
apposed to a medical condition. That is why most of the 'Professional' in the Autism
treatment community are not MD's but researchers or mental health Practioner's
Marc {public msg} The medical community is slow to react to what they will see a 'major
paradigm' shift. Many professionals are basing th
Cynthia_and_two_boys {public msg} Since pediatricians rely on the AAP to get their info,
why would the AAP not be on board with NIDS and alert the pediatricians in this?
Marc {public msg} So am I!!!
Cynthia_and_two_boys {public msg} Thanks.
Moderator {public msg} Marc, is there any last words you would like to say this evening?
Or maybe Cheryl?
Cynthia_and_two_boys {public msg} Me too - my screen keeps flashing?
Marc {public msg} Cynthia, Many profs see this the way they were taught. Unfortunately,
with today's medical community, change is very difficult.
Cheryl1b {public msg} We need everyone to work towards proving this is medical. Immune
profiling and Spectscans could do that.
Mommyo {public msg} Thank you for a wonderful chat. I learned alot and plan on using your
website and resources.
Moderator {public msg} Thank you for joining us. A transcript will be available of this
through Ron in a few days
Marc {public msg} To complete, my thought. If the medical community will review the blood
work from many of these kids, they will see that something is wRong. Then it is just a m
Marc {public msg} The NIDS protocol is healing children NOW. There are many cases of
children becoming completely 'normalized'
Marc {public msg} Once they see the blood work, it will be a matter of actually
'practicing' medicine to understand how to balance the immune system and treat these
children!
Ron {public msg} ?
Sunny {public msg} ?
Marc {public msg} Visit our site and join the yahoo group to learn more about NIDS
Moderator {public msg} Sunny you have a quick question
Sunny {public msg} yes. what is significant about the blood work that differs
Marc {public msg} I'll have Cheryl answer this as she has a much more complete
understanding than I do. Cheryl!
Moderator {public msg} lol
Sunny {public msg} or there may be info on that on your website.....?
Cheryl1b {public msg} They have signs of viral activation, elevated interferon's, low NK
cells, and activation towards food proteins, etc.
Cheryl1b {public msg} Thankfully more research has been documenting the abnormalities.
Cynthia_and_two_boys {public msg} T cell abnormalities, autoimmune bowel markers,
Cheryl1b {public msg} There has also been a finding of certain immune genes linked to
autoimmune/immune problems.
Sunny {public msg} thank you.
Ron {public msg} Thanks so much Marc, Cheryl for a very interesting Q&A on NIDS. Good
luck with your efforts to educate parents and professionals, and help our kids. Thank you
also, Ms. Moderator. Wonderful job as usual. Ineed to get my own to bed - it's east coast
time. Feel free to say on... and chat!
Marc {public msg} Thanks for all your support Ron. Let's talk soon!
Ron {public msg} Look forward to more great things from NIDS!
Moderator {public msg} You are always welcome Ron
Cheryl1b {public msg} Thank You!
Moderator {public msg} Please feel free to stay and use the room...it is here 24/7 for
your use
Cynthia_and_two_boys {public msg} Can you tell me more about the NIDS conference being
planned?
Marc {public msg} Cynthia, I'll know more in the next week to 10 days
Cynthia_and_two_boys {public msg} If CEUs are being given, will that encourage more profs
(is that for professionals, or professors? :)) to come to the conference, lend it
creditability, and get things moving?
Marc {public msg} in short, the answer to that is yes but it will probably a little more
complicated than that.
Cynthia_and_two_boys {public msg} How?'
Marc {public msg} It will require a firm commitment from the Scientific Board, it will
need to cover a wider range than just Dr. G's presentation and will probably stretch it to
more than one day!
Marc {public msg} Just a walk in the park, organizationally speaking!
Cheryl1b {public msg} Unless I'm needed, I'll say goodnight. :)
Cynthia_and_two_boys {public msg} Sorry - I'm an inquisitive little cuss here. I just
can't fathom what is so wrong with mainstream medicine that they can't open their eyes to
this for 2 hours. I get so frustrated with my pediatrician, and seeing his complete bahah
of what I've presented to him makes me wonder how in the world anyone is going to get
through to people like him.
Cynthia_and_two_boys {public msg} Good night Cheryl!
Marc {public msg} Night C. Thanks for jumping in with you always wonderful posts!
Cynthia_and_two_boys {public msg} Gosh - that would be a pretty huge park!
Cynthia_and_two_boys {public msg} So others on the Scientific Board would be speaking too?
Like Galpin and Klimas? Has that ever happened before?
Cheryl1b {public msg} welcome. :) cynthia, without have direct markers to measure
(cytokines) and direct treatments.........it's not easy for doctors to comit.....
Cynthia_and_two_boys {public msg} And what kind of response would you expect from
something like that?
Cynthia_and_two_boys {public msg} Good point Cheryl. Is that what they're working on right
now?
Cheryl1b {public msg} that is the goal
Cynthia_and_two_boys {public msg} Do you know how the fund raising is going?
Marc {public msg} Cynthia, With docs who are seeing kids already doing the treatment who
still can't see it, it will take something from the AMA or the AAP. hey will tend to play
it safe.
Cynthia_and_two_boys {public msg} So they don't get sued?
Cynthia_and_two_boys {public msg} Can I join the NIDS board?
Cheryl1b {public msg} One thing that will help is the same type of abnormalities being
found in all the other neurological disorders.
Marc {public msg} Everybody is worried about lawsuits and their own credibility.
Unfortunately, many kids will have to wait for treatment as many of the docs' play it
safe!
Cheryl1b {public msg} We need the NIH level studies in order to make this something every
child will have access to.
Cynthia_and_two_boys {public msg} I'm so grateful to have made it to see Dr. G and not
have to wait and fight like this anymore. I'm one of the lucky ones, and I get sick over
all the parent's posts that I read on our Autism Society forum who just can't see it
themselves - and are so afraid to hope for their children's recovery.
Cynthia_and_two_boys {public msg} What's different about NIH level studies? The funding,
creditability, final word? How do you achieve that?
Marc {public msg} Cynthia, The Coalition is expanding and we are about to do a
re-organization which many opportunities for people to get involved in various position on
both a national level as well as more local.
Marc {public msg} Contact me if you would like to discuss it!
Cheryl1b {public msg} The biggest problem is that so much of the newer research changes
everything that MD's thought they knew.
Cynthia_and_two_boys {public msg} Email?
Marc {public msg} Cynthia. You can e-mail me directly at Marc@healnids.org or feel free to
call the NIDS line at 818-951-8579
Cynthia_and_two_boys {public msg} I really want to get started writing a book about this.
I had already started, collecting all of Cheryl's posts too, and crashed my hard drive - I
discovered I had not been backing up my notepad where I saved everything book related.
Cynthia_and_two_boys {public msg} I'm sick at all I lost towards this. I had a starting
base outline of about 15 chapters, collections of Dr. G's best comments, excellent chat
subject discussions, just a huge wealth of information.
Cheryl1b {public msg} Cynthia, the researchers on our board have NIH research backgrounds
and would not be challenged
Cynthia_and_two_boys {public msg} That's awesome.
Cheryl1b {public msg} until proven, everything is anecdotal
Cheryl1b {public msg} well, night
Marc {public msg} Cynthia, In answer to your earlier question. Early last year we have a
video conference with other members of the SAB in addition to Mike. They were quite well
received although we did have some technical issues.
Cynthia_and_two_boys {public msg} I had read Osler's Web and read their descriptions of
the politics of research, and it seemed like they were all ignored and ridiculed for their
parts in trying to prove Chronic Fatigue Syndrome was immune related and not psychiatric.
How has Nancy Klimas's reputation withstood those problems?
Cynthia_and_two_boys {public msg} Is there any way to obtain a copy of that conference?
Cynthia_and_two_boys {public msg} What's SAB?
Cheryl1b {public msg} She receives funding from the gov and serves on CDC, etc. committees
Cynthia_and_two_boys {public msg} That's pretty much real power there, isn't it?
Cheryl1b {public msg} She was one of the experts chosen for a Canadian panel.
Cyn {public msg} SAB = Scientific Advisory Board
Cheryl1b {public msg} Canada now has a consensus on CFS
Cheryl1b {public msg} from the best in the nation
Marc {public msg} Also , there was a 'NIDS Conference' in June of 99 with Drs Galpin,
Golberg & Klimas which had about 350 attendees
Cynthia_and_two_boys {public msg} I don't know how everybody stands it.
Cheryl1b {public msg} We want things to happen now. It will if there is someway to get
everyone on the same page.
Cheryl1b {public msg} bye
Cheryl1b {leaves}
Marc {public msg} I hope the upcoming conference will reach 12-15 teaching
clinics/hospitals with a potential audience of about 5-600 medical professionals
Cynthia_and_two_boys {public msg} And out of that 5 to 6 hundred, will they possibly reach
5 that will actually start doing something about it?
Cynthia_and_two_boys {public msg} I'll ask my aunt about getting UAB on board somehow.
She's the secretary to the President at University of Alabama at Birmingham.
Marc {public msg} At that point, there will be other things going on which should increase
those odds. I would hope that out of he conference, we will generate interest in a late in
the year Symposium
Marc {public msg} Hey all, Thanks for coming. I have to go and give my angel child some
attention! He has been very good this whole time.
Cynthia_and_two_boys {public msg} Thanks for the info Marc.
