Nids

On Thursday, April 12, 2001, The Montel Williams Show will spend an hour
discussing several issues regarding autism.
The show features the Gallaghers from Brick Township, NJ, Aidan and
Shelley
Reynolds from Baton Rouge, LA and Didi Conn, who played Frenchy in the
movie
Grease. This is the first time that Mrs. Conn has gone public with her
child's autism and she was absolutely fantastic! There were several
people
interviewed in the audience as well such as political officials from
Brick
Township, Sandy Levine, a behavioral therapist, and Dr. Jerrold
Kartzinel, to
name a few.
Montel had really done his homework and was asking great questions and
making
great points!
The show should be pretty comprehensive regarding autism awareness and
covered just about every topic that there is from clusters of autism,
genetic
research, ABA, vaccines, diet, the increase throughout the country, the
Congressional Autism Caucus, the Open Your Eyes project, congressional
hearings to the cost of raising individuals with autism and how that
figure
impacts the general public. It covered just about everything you could
imagine for the simple purpose of making the general public aware of
autism
spectrum disorders.
Again, the show airs on April 12th, right in the middle of Autism
Awareness
Month, so check your local listings. As we receive more information, we
will
let you know.
The staff of Unlocking Autism

Autism Awareness Action website: http://members.xoom.com/Jn516/
Unlocking Autism's website: http://www.unlockingautism.org
H.E.A.R.T - "H

Hi Carla,
I was at the conference as well. I met someone from MPLS who gave me the
name of a Dr. that is somewhat paralleling what Dr. G is doing. (As I was
informed) The woman's name is AJ and the Dr.'s name is Dr Gianucci? I am
not sure of the spelling because I was verbally informed. I would check into
her and actually let me know what you find out. I thought the conference was
great!! I really do like Dr. Goldberg though and if you can see him, I
would!! Good Luck! Kathy

Thanks to all who responded to my post. We know for sure now that it is the
Paxil which is making him very hyper and causing the insomnia. No, we dont
see Dr. G. I just don't have the money right now--I live in Texas. Our
neurologist has prescribed the Paxil. He cut the dosage down to 1/2 tsp on
Tuesday and then I cut it to 1/4 tsp on Wednesday after noticing he was still
hyper on the 1/2. He did much better yesterday, but now I doubt we will see
the good benefits with such a low dose. Our next appt is on April 2, so I am
sure we will change meds then. We are still waiting for the results of all of
our virus testing. I am hoping that our D.O. who is also a DAN doctor will
prescribe antivirals if those tests come back positive.
Thanks again,
Tracy

Tracy,
The answer might not have to be stopping the SSRI, but rather changing to a
different one. It sounds like the Paxil (possibly because it is a liquid
form??? - can contain a lot of additives) may not agree with him. This
doesn't mean that all SSRI's don't agree with him (or that you have to accept
a "grumpy child" as a life sentence :-). You might ask your doctor (you
didn't mention if you used Dr G or not) about trying another SSRI, or
possibly trying the pill form (you can crush it into something) of Paxil.
Sharon

Hi all,
I am wondering if anyone else noticed their child becoming extremely hyper
with Paxil. My son started taking it last Thursday--1 tsp once per day--and
has been extremely hyper ever since. I have been giving it to him in the
afternoon to keep from interupting his sleep. Still, he stayed up until
midnight last night and woke up at 3:15. He was climbing the walls the
minute he got up. I also reintroduced wheat into his diet two weeks ago
after being GFCF for seven months. We didn't notice any difference on the
diet except that he was continuously grumpy and engaged in some pretty bad
self-injurious behaviors for nearly the entire time. I thought that was due
to problems at school , but after reintroducing wheat, he has been in a much
better mood and has done very well with his ABA program, but is very hyper.
I can't stand another night like last night, so if anyone has any ideas,
please email me privately @ whcmccain@...
Thanks in advance,
Tracy
Please, someone tell me I don't have to choose between a grumpy child who
sleeps or a happy child who never sleeps!

Yes--and then maybe we'd finally get some media coverage!!!
best, c. mclaughlin/los angeles
============================================

If you do not choose to read the daily updates of information for this site,
please just delete the message, there is an "email me of updates" in the
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thanks
Kay
http://trainland.tripod.com

Hi everyone,
Sorry to cross post, but I didn't know which list to single out. I have
"searched" for information on FGF2, and I am not having much luck. Can someone
forward me a website, etc. on the subject, please??
Thanks in advance,
Trina

I am sorry to those of you that tried to access the information on my
site especially the sensory page after I sent you the notice on 3/16.
Tripod accidently deleted several member sites when trying to remove
abusive pages. It is back up as of today if you would like to check it
out.
thanks!
Kay
http://trainland.tripod.com
or
http://trainland.tripod.com/sensory

Dr Goldberg will most likely NOT be able to participate in this
evenings chat. Until further notice, he will be online the FIRST
Tuesday of each month, and may drop in on other chats
throughout the month when his schedule permits.
Thanks!
Sandy

Dr. Kahler,
Thank you for your insightful and balanced comments. If the majority
of those involved in autism research could grasp the "big picture" as
you have so eloquently presented, we might be further along than we
are now. Thank you for your work on behalf of children with autism.
Ricci

Call Debra Wright of FAIR (Families Advocating for Individual Rights). She is
out of Stockton, California. She had been attending law school, and may be
done now, but even if she is not, she is a fabulous professional advocate.
Others who work with her include Jeffie Gellerman and Tracy (I cannot recall
last name). If you want an actual attorney, Debra Wright will be able to help
with a referal. I haven't been in touch with her for awhile, but try calling
209-473-3419. Incidentally, all these women are moms of children with autism.
You will love them! Becky Monday

Dr. group,
I just heard Dr. Goldberg for the first time yesterday at the
conference in Iowa on medical tx for autism. I want to pursue this
avenue right away, and am wondering if anyone in the Minneapolis area
knows of a physician familiar with Goldberg's protocols or would be
open to the ideas? I will be making an appt. with Dr. Orchard, an
immunologist at the U of M, but don't know what his attitude will be.
Thanks so much!
Carla H.

I have a friend with an autistic child who lives in Santa Rosa, Ca. and is
in desperate need of a good special Ed. attorney. Please, any names or
websites would be beneficial. You may post to the list for all to benefit
from the info, but plese carbon copy to Helen Maksutovic
<A HREF="CureBubba2000@..."
Thanx!
Tina M. Hendrix
CureNIDS2000@...
President, NIDS Coalition, Northern California
Neuro-Immune Dysfunction Syndromes
Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,
etc.

Martha,
Can you get to New York? Dr. Goldberg goes to the east coast to see patients
once a month, i believe.
Tina M. Hendrix
CureNIDS2000@...
President, NIDS Coalition, Northern California
Neuro-Immune Dysfunction Syndromes
Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,
etc.

The lab test have to be looked at in total and with the history. A positive
history with a negative test could be as significant as a positive test.
Looking at an individual test without any other information is not something
that I would recommend for any condition. Remember a positive test with a
totally negative history could mean that you have a lab error. I know that it
is hard to wait! Kathy NIDS- Northern New York

Martha
Dr G has many patients around the world. We live in Israel and
travelled to California for the first consultation. Dr G has a good
system for long distance consultation, so we now we keep in touch
with weekly emails and monthly phone consults. He tells us which
bloodwork to get done and we do it locally and fax him the results
before each phone consultation.
It is not as good as face to face contact, but since we feel that his
protocol has made the biggest difference (and continues to make a big
difference)we have are very satisfied with this set-up. Don't let
distance limit your child's recovery.
Muki

Hello everyone,
We just received our sons labs. We were scheduled to see Dr. Goldberg in
Maryland at the end of this month, which unfortunately he had to cancel and
reschedule for June. So I am wondering if any of you Goldberg protocol
professionals would be willing to take a stab at interpreting two of the labs?
I know just enough to be dangerous! His Coxsackie B types1-6 IgG panels were
all high, above the 1:10 level. Also his Coxsackie A type 10 was high. His
Rubella IGG antibody was also high-106-normal being 0.0-4.9 . There are are
other things also but they were a little more straight forward, high thyroid
etc. If anyone can give me a possible explanation I would appreciate it.
Waiting until June gives my mind alot of time to wander!!!
Thanks
Sarah Pletts

I think the extremely well child (like mine was, I bragged he had his first
med at 3, tylenol) is a common pattern in the NIDS kids.

Mary, can you give me some references to look up the controversy over
accuracy of tests for viruses and the relative levels of viruses and their
meaning?
Also, do you know if Dr. G. ever uses acyclovir? I read from one of Teresa
Binstock's postings that this was helpful for our children.
My child is improving a lot over the months, but not yet "right". When I
read what Dr. G. said about his patients often ending up perfectly normal
children (something like half!) I thought this needs investigating.
However, we are not wealthy and live overseas, etc. I would like to be WELL
INFORMED before I make the trip over so that I can maximise my appointment
and ask the right questions, also give the right answers to Dr. G!
Martha

Hi all,
We are still waiting for results of tests, but I am just curious about
something. I have heard a lot of people say that their child was/is sick
frequently. My son is just the opposite. I would say that in his six years
of life, he has been sick very infrequently. When he does get sick, he rarely
runs a fever. The last time he was really sick enough to have a high
fever--103 degrees--he was 8 months old. A CBC showed high limpocytes which
I believe is white blood cells. Does this sound like his immune system is
overworking?
Thanks,
Tracy

We live in England and my son, now 4, is improving nicely on a strict GFCF diet,
Nystatin, low sugar (I try), low salicylate diet with a lot of emphasis on
nutrition-dense foods (but not anything he reacts to, or that I can detect that
he is reacting to).
I am pleased with his progress and I think I have a lot more that I can do with
his nutrition (I have contacted a really great person to help me with this), but
I am very interested in the work being done now by Dr. Goldberg and his
colleagues through NIDS.
Although I have been to the site, the phone number to the NIDS Advisory Service
does not seem to work. I would like information on SPECIFIC tests Dr. Goldberg
requires (as I can get some done here through my insurance company, but would
probably have to pay privately if the same tests were done in the US). Also,
does anyone know of any practitioner working with the NIDS group from the UK?
It would be impossible for me to fly back and forth to Tarzana CA on a regular
basis, but maybe there is another path to take. In any case, I would appreciate
advice on this.
Martha Rolfe

Yes, I totally agree with you! After I give Meg her Kutapressin shots, we
both jump up and show off our muscles. I tell her that it makes her "strong
and healthy". On some part of her wavelength she understands. We too had
to hold her down for every dose of everything and then after a few days, she
just decided to take it and get it over with. This doesn't work for
everyone, though. I have a friend whose son KNOWS when it is time for his
shot and he will say "No shot". It takes the whole family to hold him still
for his shots. This gets to be a major drag after a while. I hope that he
becomes healthy enough to drop the shots. Good luck.
Ginger

When we first started with Dr. G. our son age 5 would not take pills. liquid
or anything that had it sprinkled on it. But it was in his best interest to
give it to him...so we held him down physically, two adults to get his
medicine down, close his mouth and tell him swallow. This took about 10
minutes each time. It took him only four days to start taking the medicine
from our hand and swallow by himself. I believe that each time we gave him
medicine we kept telling him it would make him better. When we change
medicines now we go through a similar routine because it is a different color
or shape, but he wants us to hold him down because afterwards he gets
tickled. Hope this might help, because it has helped not only with Dr. G's
medicines but also for vitamins, tylenol and advil we need to give
occasionally.
Marvina

It's sad that the establishment feels if a disorder is genetic, there is no
help available. Phenylketonuria is genetic, but avoidable with a simple
elimination of pheylalinines. The Pima Indian tribes suffer from a form of
genetic diabetes which is easily controlled with insulin. I hope these
researchers stop to realize that genetic does not mean controllable. If our
children's immune problems are indeed genetic...which I'm not convinced
of...there is no reason NOT to continue searching for immune modulators.
Scientists worry me sometimes with their seeming tunnel vision!
Traci
mom to Jamie age 5, and David, age 6--intensive genetic studies so far have
found no genetic basis for their autism. Jamie is nearly recovered-what a
brilliant kid. David has a ways to go, but has finally at the age of six,
begun talking.
Dr. Goldberg's protocol has changed both of their lives slowly, surely, but
greatly. Although we haven't seen Dr. G yet, a local neurologist here has
embraced his protocol (God bless him!)
We are just beginning antivirals with David. Let the geneticists carry on,
but intensive behavioral therapy and sound medical science DOES allow these
kids a lot of reasons for expecting to live good lives.
Page and Dave--if you're reading this, I'm the gal from Myrtle Beach...my
computer ate some email and I never got to answer you before losing your
email address! I'll be happy to answer any more questions you might have!
Traci

Hey,
I live in Nashville, right near Vanderbilt. It seems that this community, and
especially Vanderbilt, is concentrating its efforts on proving autism is
genetic. There was just a talk two nights ago for the public in town, and one
of the presenters, representing Vanderbilt, was saying that they have determined
that there are genes, more than one, that seem to be causing autism.
I, personally, am pursuing the medical intervention route, in that I feel that
the immune system is messed up in these kids, and that there are medical
treatments that can be done to "cure" autism. I wish Vanderbilt would not put
all its eggs in one basket, the genetic one, and would also look into possible
medical causes and interventions. Every time I contact them regarding secretin,
immune sysytem, mercury, diet, etc., they just shoot me down.
Like I said, they claim to be on the brink of determining which genes are
responsible for autism. If that is so, and I am not saying it is or isn't,
would autism then be considered an "incurable" disease, and therefore, all of
the medical interventions that are being touted as possible "cures" are just
wasted time??
I certainly hope not. I am banking on the fact that there is a "cure" out there
for my son.
Trina

Mary,
There is a book called "The Virus Within" by Nicholas Regush which points
toward HHV6 being a very big co-factor in AIDS, possibly bigger than HIV.
It has been found that HHV6 kills CD4 cells much more effectively than HIV.
In a rush to find "the marker" for AIDS, once HIV was found, most co-factor
theories were thrown out. The good news is that the direction in AIDS
research has changed. The aim now is to hold the disease in check (not
necessarily find a cure) and to ensure that patients have quality of life.
So many of the retrovirals have very nasty side affects that quality of life
has become a big issue. So, now co-factors are again being looked at
because if AIDS can be attacked from a different angle using research
already conducted, it would be better for the patients length of life and
quality of life. (I hope this makes sense).
When my daughter was younger she constantly watched TV standing on her head
(on couch cushions). She would also press her head against my body. She
was seeking this pressure, but I didn't know why. Now that her HHV6 titers
are down from 40-60 to 20 (after 21 months of Valtrex), she only stands on
her head once in a great while. Because HHV6 lives in the brain
(neurotropic), I asked Dr. G if this could possibly lead to swollen brain
tissue. He agreed that it could. I can't imagine how painful that must
have been.
HHV6 is one bad *&*&*^%$$$! I think that the drugs in Dr. G's arsenal can
only do so much. I can't wait for the new neurotransmitters to see if they
can pull the HHV6 back into its inactive state. At least, that's how I
understand it.
Ginger

Terese,
your posts are great, but they make me feel superdumb. could you try to
describe these things more in lay terms?
thanks for your invaluable work
mary nunan

Please support this year's "Power of ONE" rally and conference coming up
very soon in Washington, D.C.......
Many who attended last years first ever "Open Your Eyes to Autism" and
"Hear~Their~Silence" - were motivated to do more for awareness in their own
communities and states - well this year's answer and follow-up to that
Historic event for the Autism community is the "Power of ONE" Rally for
National Autism Awareness and "Empowerment" Conference preceeding the
Rally.....
The Conference will empower parents, professionals, and individuals, on just
how to make their concerns known and their voices heard. Learn how you as
a parent or relative or individual or professional --in the autism world--
can be a more effective advocate and more! The 2 day conference will be
money well spent! Instead of spinning your wheels in the system, learn
tips and techniques that you can take back home, share with others, and put
to work!! What you will learn at the Conference can get you on the road to
introducing legislation in your state for Autism!
Then, on Friday - gather with thousands of others at the "Power of ONE"
Rally right in front of the Capitol along with the "Open Your Eyes to
Autism" picture display boards!!!!!!
Show your support for this awareness event for the Autism community by
attending this Rally! Each year this rally is sure to get bigger and
better and more National Attention!!! Please be a part of it!!
There is a fee for the Conference, but the Rally is free! To learn more
about both events - go to www.UnlockingAutism.org
If you cannot attend the rally - please show your support by buying
Unlocking Autism's newly designed Rally T-Shirt!!! Whereever you are on
April 27th - please make sure your family is showing support for the events
in Washington by wearing these T-Shirts that benefit Autism Awareness!!
Also - make your Legislatures "Aware" by buying them a "Bear" !!!
The Vermont Teddy Bear Company has teamed up with Unlocking Autism to offer
the "Aware Bear" for sale to support the rally and Awareness efforts of
Unlocking Autism....
This is just my personal idea - but wouldn't it be a statement if the
legislatures in each state had an "Aware Bear" sitting on their desk to
remind them of our children and their needs for more services and funding!!
So,,,,, if you can, make your legislature "Aware" by buying them a
"Bear".....
April 25-27, 2001 in Washington, DC - be there!!! And if you can't make it
- please buy a Rally T-Shirt to support the event in your community!!!
For information on purchasing an "Aware Bear" for someone on behalf of your
child to "Open Their Eyes to Autism" - go to www.UnlockingAutism.org
Also, check out www.HelpAutism.org - for HEART's "Hear My Silence" CD that
will be played at the rally!!!!! Proceeds benefit Autism Research
Funding......
Thank you!
Michelle Guppy

Ho God - This is horrible. So glad that I live in Michigan. We are tied
for second worst!! These are only the numbers for 1999 - I wonder what the
numbers for 2000 are. I read somewhere that every day, six more children in
California are diagnosed. Is anyone out there paying attention to these
numbers besides the parents of AI kids??
Ginger

Michelle,
Check out the website for The Gray Center, www.TheGrayCenter.org. Carol
Gray, the creator of social stories, has lots of information on social
stories and I believe information on where her social story books can be
purchased.
I am currently working on a conference with this wonderful organization. It
is titled "The Best of Both Worlds: Perspectives on Autistic Spectrum
Disorders" and is being held October 16-17, 2001 in Grand Rapids, Michigan.
Speakers to be featured include Dr. Tony Attwood, Dr. Temple Grandin, Dr.
Liane Holliday-Willey, Dr. Diane Twachtman-Cullen, Linda Hodgdon, and Carol
Gray.
I would be happy to send a conference brochure to anyone on the list that
would like more information.
Kris

I received this from another list. Rosemarie
Autism Rates

I'll do it. Am leaving on Sunday for a week with Dr. Goldberg for mentoring.
You can reach me at his office from the 19th to the 23rd. Kathy NIDS-Northern
New York

I am looking for several people to help manage the NIDS 800 number. This
needs to be someone very familiar with the protocol/Dr. Goldberg/the NIDS
hypothesis etc. I have been doing it for the past several months.
When our PSA starts to run we will presumably get more calls. Already since
the Texas presentation calls have picked up. I have always paid for the return
calls myself, but they could probably be reimbursed by NIDS.
Ideally I would get 2 or 3 folks to coordinate this with me. We are all
short of time, I know, but I think this is an important service and not really a
great investment of time. (our phone would be checked every 2-3 days and calls
would be returned or referred).
Please mail me directly if you think you could help the NIDS parent network
with this. Thanks! Lisa Dugua

Hello Debbie in California
You have made a wise choice seeing Dr. G!!!!!!!
My son's "autism" was not late-onset. If I think back on his infancy, he was
always a little off. He has always been considered more mild on the scale,
but Dr. G's help has really allowed him to blossom. Dr. Goldberg will
recommend no dairy, no WHOLE wheat, no cocolate, and very limited sugar. I
began this route, and later took my son off most of the gluten foods (with
exception to foods like ketchup). Throughout your dietary interventions, keep
a close watch for any types of food reactions. Some children are sensitive to
many different foods. My son is reactive, for example, to corn and corn
products.
Please keep all of us posted on your progress. This is a wonderful list and
everyone on it keeps this in mind: they want children to be well. Welcome and
good luck! Becky

Here's my two cents -
You get HHV6 from having roseola. For the great majority of the population
(85%) this then goes into a latent or inactive virus (HHV6 titer of under
10). If you have a titer greater than 20, they feel this is a re-activation
of the virus. Personally, I feel that my daughter (titers of 40-60)
probably never had this virus go into it's latent form and it has been
living in her brain (neurotropic) since she first had roseola at about 9
months old. As far as I know it would be impossible to "catch" this virus.
Ginger

Michelle,
I live in Hagerstown md.About an hour from baltimore. My son JJ is 13 and
mainstreamed in middle school but I had to fight to get him what he needs. He
now has his own room and his own aid. Through our local ARC he gets horseback
riding and music therapy. I run the local ASA. Please check out our site.....
http://www.alleganyinternet.net/autism.html Lois

Citation 1 seems extremely important because the researchers documented regional
vasculitis
associated with a pathogen that is challenging to detect (eg, 8). Are these
researchers
illustrating a cause of hypoperfusion (increasingly documented in autism)? I
find myself
wondering if pathogen-induced CNS-vasculitis can occur even when symptoms of
peripheral GBS are
not present. We note that at least one common pathogen (EBV) is associated with
ASD-like traits
(9) and with arthritis (10); and that several MHC alleles are associated with
EBV and with
autism (10-11).
1. Crit Care 2000;4(4):245-248
A case of central nervous system vasculitis related to an episode of
Guillain-Barre syndrome.
Sinardi D et al.
http://www.pubmedcentral.nih.gov/picrender.cgi?artid=14815&pictype=5
The authors report their knowledge about an uncommon case of isolated
vasculitis, restricted to the left sylvian artery during an auto-immune
Guillain-Barre syndrome (GBS), sustained by cytomegalovirus (CMV). An acute
cardiopulmonary failure requiring a ventilator and vasopressor support
manifested, notwithstanding plasma exchanging and immune-modulating therapy. An
IgM-enriched formula administration coincided with a rapid amelioration of GBS
and vasculitis to a complete recovery the next month after her discharge to a
rehabilitation centre.
2. Appl Environ Microbiol 2000 Sep;66(9):3917-23
Amplified fragment length polymorphism analysis of Campylobacter jejuni strains
isolated from chickens and from patients with gastroenteritis or Guillain-Barre
or Miller Fisher syndrome.
Duim B, Ang CW, van Belkum A, Rigter A, van Leeuwen NW, Endtz HP, Wagenaar JA
http://aem.asm.org/cgi/reprint/66/9/3917.pdf
The high-resolution genotyping method of amplified fragment length polymorphism
(AFLP) analysis was used to study the genetic relationships between
Campylobacter jejuni strains infecting chickens (n = 54) and those causing
gastroenteritis in humans (n = 53). In addition, C. jejuni strains associated
with the development of Guillain-Barre syndrome (GBS) (n = 14) and Miller Fisher
syndrome (MFS) (n = 4), two related acute paralytic syndromes in human, were
included. Strains were isolated between 1989 and 1998 in The Netherlands. The
AFLP banding patterns were analyzed with correlation-based and band-based
similarity coefficients and UPGMA (unweighted pair group method using average
linkages) cluster analysis. All C. jejuni strains showed highly heterogeneous
fingerprints, and no fingerprints exclusive for chicken strains or for human
strains were obtained. All strains were separated in two distinct genetic
groups. In group A the percentage of human strains was significantly higher and
may be an indication that genotypes of this group are more frequently associated
with human diseases. We conclude that C. jejuni from chickens cannot be
distinguished from human strains and that GBS or MFS related strains do not
belong to a distinct genetic group.
3. J Neuroimmunol 1999 Dec;100(1-2):74-97
Pathogenesis of Guillain-Barre syndrome.
Hughes RA, Hadden RD, Gregson NA, Smith KJ
Department of Neuroimmunology, Guy's, King's and St. Thomas' School of Medicine,
Guy's Hospital, London, UK. richard.a.hughes@...
http://www.neuroscion.com
Recent neurophysiological and pathological studies have led to a
reclassification of the diseases that underlie Guillain-Barre syndrome (GBS)
into acute inflammatory demyelinating polyradiculoneuropathy (AIDP), acute motor
and sensory axonal neuropathy (AMSAN) and acute motor axonal neuropathy (AMAN).
The Fisher syndrome of ophthalmoplegia, ataxia and areflexia is the most
striking of several related conditions. Significant antecedent events include
Campylobacter jejuni (4-66%), cytomegalovirus (5-15%), Epstein-Barr virus
(2-10%), and Mycoplasma pneumoniae (1-5%) infections. These infections are not
uniquely associated with any clinical subtype but severe axonal degeneration is
more common following C. jejuni and severe sensory impairment following
cytomegalovirus. Strong evidence supports an important role for antibodies to
gangliosides in pathogenesis. In particular antibodies to ganglioside GM1 are
present in 14-50% of patients with GBS, and are more common in cases with severe
axonal degeneration associated with any subtype. Antibodies to ganglioside GQ1b
are very closely associated with Fisher syndrome, its formes frustes and related
syndromes. Ganglioside-like epitopes exist in the bacterial wall of C. jejuni.
Infection by this and other organisms triggers an antibody response in patients
with GBS but not in those with uncomplicated enteritis. The development of GBS
is likely to be a consequence of special properties of the infecting organism,
since some strains such as Penner 0:19 and 0:41 are particularly associated with
GBS but not with enteritis. It is also likely to be a consequence of the
immunogenetic background of the patient since few patients develop GBS after
infection even with one of these strains. Attempts to match the subtypes of GBS
to the fine specificity of anti-ganglioside antibodies and to functional effects
in experimental models continue but have not yet fully explained the
pathogenesis. T cells are also involved in the pathogenesis of most or perhaps
all forms of GBS. T cell responses to any of three myelin proteins, P2, PO and
PMP22, are sufficient to induce experimental autoimmune neuritis. Activated T
cells are present in the circulation in the acute stage, up-regulate matrix
metalloproteinases, cross the blood-nerve barrier and encounter their cognate
antigens. Identification of the specificity of these T cell responses is still
at a preliminary stage. The invasion of intact myelin sheaths by activated
macrophages is difficult to explain according to a purely T cell mediated
mechanism. The different patterns of GBS are probably due to the diverse
interplay between antibodies and T cells of differing specificities.
4. J Neurol Neurosurg Psychiatry 1999 Mar;66(3):376-9
Antiganglioside antibodies in Guillain-Barre syndrome after a recent
cytomegalovirus infection.
Khalili-Shirazi A, Gregson N, Gray I, Rees J, Winer J, Hughes R
http://jnnp.bmjjournals.com/cgi/reprint/66/3/376.pdf
OBJECTIVE: To study the association between anti-ganglioside antibody responses
and Guillan-Barre syndrome (GBS) after a recent cytomegalovirus (CMV) infection.
METHODS: Enzyme linked immunosorbant assay (ELISA) was undertaken on serum
samples from 14 patients with GBS with recent cytomegalovirus (CMV) infection
(CMV+GBS) and 12 without (CMV-GBS), 17 patients with other neurological diseases
(OND), 11 patients with a recent CMV infection but without neurological
involvement, 11 patients with recent Epstein-Barr virus (EBV) infection but
without neurological involvement, and 20 normal control (NC) subjects. RESULTS:
IgM antibodies were found at 1:100 serum dilution to gangliosides GM2 (six of 14
patients), GM1 (four of 14), GD1a (three of 14) and GD1b (two of 14) in the
serum samples of the CMV+GBS patients, but not in those of any of the CMV-GBS
patients. IgM antibodies were also found to gangliosides GM1, GD1a, and GD1b in
one of 11 OND patients, to ganglioside GM1 in one of 11 non- neurological CMV
patients, and to ganglioside GD1b in one of 20 NC subjects. Some patients with
EBV infection had IgM antibodies to gangliosides GM1 (five of 11), GM2 (three of
11), and GD1a (two of 11). However, the antibodies to ganglioside GM2 had a low
titre, none being positive at 1:200 dilution, whereas five of the CMV+GBS serum
samples remained positive at this dilution. CONCLUSION: Antibodies to
ganglioside GM2 are often associated with GBS after CMV infection, but their
relevance is not known. It is unlikely that CMV infection and anti-ganglioside
GM2 antibodies are solely responsible and an additional factor is required to
elicit GBS.
5. Ann Neurol 1998 Nov;44(5):815-8
Genetic contribution of the tumor necrosis factor region in Guillain-Barre
syndrome.
Ma JJ et al.
We studied genetic polymorphisms in the tumor necrosis factor (TNF) region
in 81 Japanese patients with Guillain-Barre syndrome (GBS) and 85 controls.
A significantly higher frequency of the 100-base pair (bp) (TNFa2) allele of the
TNFa microsatellite marker, which is associated with high TNF alpha production,
existed in Campylobacter jejuni-positive (Cj+) GBS patients than in controls,
suggesting the involvement of a genetic predisposition to high TNF alpha
secretion in the development of C. jejuni-related GBS.
6. Neurology 1998 Oct;51(4):1110-5
The spectrum of antecedent infections in Guillain-Barre syndrome: a case-control
study.
Jacobs BC et al.
OBJECTIVE: To determine which antecedent infections are specifically associated
with the Guillain-Barre syndrome (GBS). BACKGROUND: Infections with many agents
have been reported preceding GBS. Some infections are related to specific
clinical and immunologic subgroups in GBS. Most agents were reported in case
reports and uncontrolled small series of GBS patients only, and their relation
to GBS and its subgroups remains unclear. METHOD: A serologic study for 16
infectious agents in 154 GBS patients and 154 sex- and age-matched controls with
other neurologic diseases. Acute phase, pretreatment samples were used from
clinically well-defined GBS patients. The seasonal distribution of serum
sampling in the GBS and control group was the same. RESULTS: Multivariate
analysis showed that in GBS patients, infections with Campylobacter jejuni
(32%), cytomegalovirus (13%), and Epstein-Barr virus (10%) were significantly
more frequent than in controls. Mycoplasma pneumoniae infections occurred more
often in GBS patients (5%) than in controls in univariate analysis. Infections
with Haemophilus influenzae (1%), parainfluenza 1 virus (1%), influenza A virus
(1%), influenza B virus (1%), adenovirus (1%), herpes simplex virus (1%), and
varicella zoster virus (1%) were also demonstrated in GBS patients, but not more
frequently than in controls. C. jejuni infections were associated with
antibodies to the gangliosides GM1 and GD1b and with a severe pure motor form of
GBS. Cytomegalovirus infections were associated with antibodies to the
ganglioside GM2 and with severe motor sensory deficits. Other infections were
not related to specific antiganglioside antibodies and neurologic patterns.
CONCLUSIONS: Recent infections with C. jejuni, cytomegalovirus, Epstein-Barr
virus, and M. pneumoniae are specifically related to GBS. The variety of
infections may contribute to the clinical and immunologic heterogeneity of GBS.
7. Clin Microbiol Rev 1998 Jul;11(3):555-67
Campylobacter species and Guillain-Barre syndrome.
Nachamkin I, Allos BM, Ho T
http://cmr.asm.org/cgi/reprint/11/3/555.pdf
Since the eradication of polio in most parts of the world, Guillain-Barre
syndrome (GBS) has become the most common cause of acute flaccid paralysis. GBS
is an autoimmune disorder of the peripheral nervous system characterized by
weakness, usually symmetrical, evolving over a period of several days or more.
Since laboratories began to isolate Campylobacter species from stool specimens
some 20 years ago, there have been many reports of GBS following Campylobacter
infection. Only during the past few years has strong evidence supporting this
association developed. Campylobacter infection is now known as the single most
identifiable antecedent infection associated with the development of GBS.
Campylobacter is thought to cause this autoimmune disease through a mechanism
called molecular mimicry, whereby Campylobacter contains ganglioside-like
epitopes in the lipopolysaccharide moiety that elicit autoantibodies reacting
with peripheral nerve targets. Campylobacter is associated with several
pathologic forms of GBS, including the demyelinating (acute inflammatory
demyelinating polyneuropathy) and axonal (acute motor axonal neuropathy) forms.
Different strains of Campylobacter as well as host factors likely play an
important role in determining who develops GBS as well as the nerve targets for
the host immune attack of peripheral nerves. The purpose of this review is to
summarize our current knowledge about the clinical, epidemiological,
pathogenetic, and laboratory aspects of campylobacter-associated GBS.
8. Transfusion 1998 Mar;38(3):271-8
Cytomegalovirus DNA can be detected in peripheral blood mononuclear cells from
all seropositive and most seronegative healthy blood donors over time.
Larsson S et al.
BACKGROUND: A poor correlation between cytomegalovirus (CMV) seroreactivity and
the risk of CMV transmission prompted an investigation of the presence of CMV
DNA in peripheral blood mononuclear cells (PBMNCs) from seropositive and
seronegative blood donors. Because latent CMV exists in monocytes,
monocyte-enriched cells were analyzed separately. STUDY DESIGN AND METHODS:
Samples from 270 blood donors were tested with a sensitive polymerase chain
reaction (PCR) test that detects two CMV genes, and the results were correlated
to CMV serology. Cross-reactivity with other herpesvirus genes was not recorded.
RESULTS: PCR testing demonstrated that 71 percent of seropositive donors harbor
CMV in PBMNCs. Thus, not all seropositive donors were CMV DNA positive when
individual samples were tested. Tests repeated over a period of time showed that
all seropositive individuals were positive. Increased sensitivity was obtained
with enriched monocytes. Among seronegative donors, 55 percent harbored CMV DNA
in monocyte-enriched PBMNCs, while 14 percent had CMV DNA in PBMNCs. CONCLUSION:
All seropositive donors harbored latently infected PBMNCs, as demonstrated by
the testing of samples collected over time. In addition, a substantial
proportion of seronegative individuals are CMV carriers and might transfer
infection. The findings concur with clinical evidence of CMV transmission by
blood components from seronegative individuals and with in vitro reactivation of
CMV in PBMNCs from seronegative donors.
9. J Child Neurol 2000 Dec;15(12):791-6
Persistent preceding focal neurologic deficits in children with chronic
Epstein-Barr virus encephalitis.
Caruso JM et al.
Epstein-Barr virus encephalitis is a self-limiting disease with few sequelae.
Persistence of neurologic deficits prior to and after the acute illness has yet
to be described in children. We describe five children with persistent cognitive
and focal neurologic deficits due to chronic Epstein-Barr virus encephalitis
with various T2-weighted magnetic resonance imaging abnormalities. Clinical
features were a 9-year-old boy with aphasia and apraxia, an 11-year-old girl
with impulsivity and inappropriate behavior, a 17-year-old boy with
deterioration of cognitive skills and judgment, a 5-year-old boy with
complex-partial seizures, and a 6-year-old girl with obsessive-compulsive
behavior. All patients had elevated serum Epstein-Barr virus titers for acute
infection, with cerebrospinal fluid polymerase chain reaction positive for
Epstein-Barr virus in four patients. Three children were treated with
methylprednisolone with minimal improvement without changes on magnetic
resonance imaging. Epstein-Barr virus encephalitis can present with chronic and
insidious neurologic symptoms and should be considered in the differential
diagnosis of children with acute or chronic neurologic illness of unknown
etiology.
10. Arthritis Rheum 1999 Jul;42(7):1485-96
Synovial Epstein-Barr virus infection increases the risk of rheumatoid arthritis
in individuals with the shared HLA-DR4 epitope.
Saal JG et al.
OBJECTIVE: To investigate the presence of the Epstein-Barr virus (EBV) in
rheumatoid arthritis (RA) synovium and its correlation with the HLA genotype in
an attempt to elucidate the role of EBV in the pathogenesis of RA. METHODS: EBV
DNA/RNA was investigated by polymerase chain reaction (PCR) analysis of synovial
tissue from 84 patients with RA and from 81 patients with non-RA arthritis
(controls) and was correlated with the patients' HLA genotype. RESULTS: EBV DNA
and EBV-encoded RNA 1 transcripts were significantly more frequently present in
synovial tissue from the RA patients (29 of 84) than in that from the non-RA
patient controls (8 of 81). EBV DNA-positive individuals had a 5.47 times higher
risk of presenting with RA than did EBV DNA-negative individuals. In
HLA-DRB1*0401,0404,0405,0408-positive or shared epitope-positive patients, the
risk was further increased (odds ratio for EBV and HLA-DR4 approximately 41, for
EBV and the shared epitope approximately 15) compared with those who lacked both
EBV DNA and RA-linked HLA genotypes. CONCLUSION: EBV seems to function as an
environmental risk factor for RA, particularly in patients with the RA-linked
HLA-DRB1 alleles.
11. J Neuroimmunol 1996 Jul;67(2):97-102
Strong association of the third hypervariable region of HLA-DR beta 1 with
autism.
Warren RP et al.
We reported that the major histocompatibility complex (MHC) including the null
allele of the C4B gene and the extended haplotype B44-C30-DR4 is associated with
autism. We report now that the third hypervariable region (HVR-3) of certain DR
beta 1 alleles have very strong association with autism. The HVR-3 of DR beta 1*
0401 or the shared HVR-3 alleles DR beta 1* 0404 and DR beta 1* 0404 and DR
*0101, was expressed on extended haplotypes in 23 of 50 (46%) autistic subjects
as compared to only 6 of 79 (7.5%) normal subjects. Another HVR-3 sequence, the
DR beta 1* 0701 allele, was carried on extended haplotypes in 16 (32.0%) of the
autistic subjects as compared to 8 (10.1%) of the normal subjects.

Hi. My son is scheduled to see Dr. Goldberg for the
first time in a couple of weeks. His tests came back
negative for viruses. I know Dr. Goldberg feels that
most of our kids have viruses. We also recently
started sensory integration. They see many types of
kids but I believe most of the clientele are autistic.
I was wondering if I'm placing my son in a much
greater risk of contracting a virus by taking him
there. I think it is helping him but I don't want to
hurt him in the long run. Does anyone have any
thoughts regarding this?
Thanks Kathy

We're contemplating a move to Maryland - just south of Baltimore. My
husband's company is right near BWI and we'd like to be within 20 minutes
of there. I was wondering if anyone knew of any towns we should look
into. Our 7 year old is autistic and our 6 year old will be seeing Dr.
Goldberg this summer due to very high HHV6 titer. Both are fully
mainstreamed but the 7 year old (Al) needs quite a few services and lots
of understanding. They are also both in occupational therapy, and Al is
in physical therapy and will be starting vision therapy. If anyone has
any suggestions of private therapy places that could meet our needs
within that area of Maryland please let me know! I would appreciate any
positive as well as negative reports on the public school system in
Maryland regarding the care and understanding of our children. We do not
have to move, but we are experiencing lots of difficulty with their
current school and my husband has this job offer...That and we want to
get back to the east coast for some FRESH seafood!! :) I've only cooked
fish once since we've been in Illinois and even the cats wouldn't eat it
(the fish or my cooking?? hmmmmm). Way off topic :) Thanks for your
help.
Michelle

Hello everyone,
I am new to this list and wanted to post a questions regarding an
appmt. I have for my son Tyler in July with Dr. Goldberg. It seems
to me, correct me if I'm wrong, that maybe most of Dr. Goldberg's
success has been with children that have late-on-set autism? My son
does not fall into this category.
So I guess the question is, how many of you have a child that did not
regress, per say, and have been helped by Dr. Goldberg? I suppose
all of these kids can be helped, but it just seems that the ones that
have late on-set are the ones that reached managed recovery.
My son has been in a ABA home program for over a year now and I've
already taken him off casein (since Jan. 2001) and also working on
getting him gluten free. This brings up another question....does Dr.
Goldberg believe in such a strict diet or just eliminating milk,
whole wheat, chocolate and berries? I'm also working with my son's
primary doctor on getting the NIDS bloodtests.
So many questions....so little time....thanks to any one that can
give me some feedback!
Debbie in California

Autism Advocate and Quarterback Doug Flutie Moves to San Diego
From the Buffalo Bills in New York, Doug Flutie is hanging up his snow
shoes for beach sandles in the sub-tropical San Diego by joining the
Chargers. Flutie is active in autism advocacy through various events he
helps promote and through his Flutie Foundation.
His move puts him in the neighborhood of other noted Southern
California autism advocacy organizations: Cure Autism Now is in neighboring
Los Angeles and the Autism Research Institute is headquartered in San Diego
MMR Vaccine Suit to Go Ahead in the US
[By Mindy Hung in Medscape.]
Despite results of two new studies concluding that the
measles-mumps-rubella (MMR) vaccine is not associated with a rise in the
diagnosis of autism, parents' groups in the United States continue in their
push to launch a class-action suit against the vaccine's manufacturers.
The studies, published in the February 24 issue of the British Medical
Journal and the March 7 issue of The Journal of the American Medical
Association, are only the latest chapters in a dispute between the medical
community, which stands behind the inoculation, and a small but vocal group
of parents and researchers who contend that the vaccine, when administered
at too young an age, triggers an autoimmune reaction that leads to
development of autism. Immunizations usually begin at 15 months, and
diagnosis of autism often occurs soon after at 2-5 years.
Legal action against such industry giants as Pasteur-Merieux,
SmithKline Beecham, and Merck is already taking place in the United Kingdom.
James Kaye, MD, MPH, lead investigator for the BMJ paper, told
Medscape that the research was conducted with the intention of addressing
the debate. "We were aware of the controversy...and we had available an
excellent data source (the General Practice Research Database [GPRD]) which
could be used to study the question."
Kaye and colleagues' analysis of the GPRD, a database that currently
holds records on 3 million patients from general practices throughout the
United Kingdom, revealed that the number of children receiving the triple
inoculation held high and steady, with coverage at over 95% in successive
birth cohorts. Rates of autism diagnosis, however, increased nearly 4-fold
over time among 2- to 5-year-old boys born in 1988-1993.
The investigators write, "If the MMR vaccine were a major cause of the
increasing incidence of autism, then the risk of autism in successive birth
cohorts would be expected to stop rising within a few years of the vaccine
being in full use."
Since the numbers of children found to have autism continued to
increase regardless of how many received immunizations, Kaye and colleagues
conclude that there is little evidence to indicate an association between
vaccine and diagnosis. They speculate that the marked growth in reported
incidence may come as a result of changes in diagnostic criteria, increased
awareness of the condition among parents and general practitioners, or
environmental factors not yet identified.
The JAMA study, conducted by Loring Dales, MD, of the immunization
branch of the California Department of Health Services in Berkeley, posted
similar results in children surveyed from 1980 through 1994.
The investigations also attempted to answer criticisms raised by
Andrew Wakefield, FRCS, a researcher at Royal Free Hospital, University
College London, whose studies, published in The Lancet in 1998, were the
first to link the disorder with the timing of the vaccine. In a later
editorial comment in The Lancet, Wakefield questioned the results of a
smaller-scale time-trend analysis by Taylor and colleagues, published in The
Lancet in 1999, contending that the sample was too modest.
Wakefield has continued to be vocal on the subject, writing a highly
publicized editorial in the December issue of the Journal of Adverse Drug
and Toxicological Reviews that alleged that early studies of MMR vaccine
indicated safety problems and that the licensure was premature.
The United Kingdom, where the controversy has played out more
prominently thanks, in part, to the lawsuit, has seen MMR immunizations drop
to 88% overall, and down to 75% in some areas. The results of the latest BMJ
and JAMA studies serve as vindication for government organizations, such as
the US Centers for Disease Control and Prevention and Britain's National
Health Service, which have long held that the vaccine is safe.
Government health officials, however, are still reminding the public
that the success of vaccinations depends on higher coverage -- about 95% of
the population needs to be inoculated in order to forestall spread of the
diseases. The officials caution that preventing children from receiving
inoculation constitutes a dangerous and needless threat to public health.
The last measles outbreak in the United Kingdom, in 1980, killed 17 people.
Despite these warnings, it is likely that controversy will continue to
surround the MMR vaccine. An article in the March issue of Archives of
Disease in Childhood cites a connection between the triple inoculation and
idiopathic thrombocytopenic purpura. Moreover, plans to launch a
class-action suit in the United States against vaccine manufacturers are
still under way, according to Ray Gallup, whose son Eric is autistic, a
condition which Gallup attributes to a reaction to the MMR vaccine. Gallup
has collected the names of more than 400 US parents who can relate similar
experiences.
Gallup, who is also president and founder of the New Jersey-based
Autism Autoimmunity Project, which funds research on the subject, noted that
he would like to see immune tests performed on children before they receive
vaccinations.
Immunization against measles, mumps, and rubella can also be
administered individually at annual intervals; however, because no studies
exist on the efficacy or timing of monovalent vaccines compared with the
triple inoculation, it should not be considered a safer alternative to the
MMR vaccine.
BMJ 2001;322(7284):460-463
Tina M. Hendrix
CureNIDS2000@...
President, NIDS Coalition, Northern California
Neuro-Immune Dysfunction Syndromes
Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,
etc.

William F. Hickey is a world-class expert in immune cell participation in brain
function and
brain pathology. He is co-editor (with Robert W. Keane) of an old (1997) text
whose chapters
still are among the best reviews in topics relevant to autism. The title of the
text is
Immunology of the nervous system.
Chapter 7 is entitled Lymphocyte entry and the initiation of inflammation in the
central
nervous system (WF Hickey, H Lassmann, AH Cross). A section is entitled:
Types of CNS inflammation [p201]:
"As noted above, leukocytes of hematogenous origin are exceptionally rare in a
healthy
mammalian CNS. However, they accumulate in the brain or spinal cord in response
to a wide
number of pathological conditions. But the type and quantity of inflammatory
cells appearing in
the CNS varies widely depending on the stimulus attracting them or their
inherent ability to
attack a CNS antigen. In areas of infarction, neutrophils appear within 12-24
hours and are
themselves rapidly replaced by macrophages. In myriad bacterial infections,
neurophils and
plasma cells produce either meningitis, or demarcate a zone of acute
inflammation of the brain
parenchyma destined to become an abscess. In tuburculosis infections and the
majority of acute
[different from chronic, sub-clinical] viral encephalitides, T cells and
macrophages
predominate. Finally, there are a number of inflammatory CNS conditions wherein
no overt tissue
death or any known infectious agent is defined. Many of these conditions are
believed to be
autoimmune (e.g., multiple sclerosis; (MS), postinfectious encephalomyelphathy);
however, some
are attributable to enzymatic defects (adrenoleukodystrophy) or
neurodegenerative causes...
While this is far from a complete list of conditions in which leukocytes are
easily found in
the normally privileged CNS, it serves to demostrate the variety of stimuli that
can induce
such cells to enter. Yet all of these diseases require that leukocytes initially
attach to
specific adhesion molecules on CNS endothelial cells, thereby initiating their
process of entry
into the CNS from the circulation.
In conditions attracting neutrophils, including instances of
substantial tissue
death or the presence of bacteria or fungi, the blood-brain barrier (BBB) is
often physically
disrupted or microbial products and/or complement components attract leukocytes.
In addition,
changes in the CNS endothelial cells are more conducive to granulocyte
attachment. Such
situations are not unique to the CNS, and appear to follow the stereotypic
process of the
evolution of acute inflammation observed in any bodily site. In other CNS
diseases such as
viral infections, T cells must identify and localize the viral antigen for which
they are
specific in CNS parenchyma. In these immune responses there is a foreign
pathogen which is the
target of the attack. T-cell mediated inflammation, as occurs in MS,
postinfectious
encephalomyelitis, or EAE, however appears to be a distinct process. In such
conditions there
is no devitalized tissue nor microbial tissues to attack...
[Comments:]
1. Always the diagnostic challenge: is a pathogen present and still
etiologically significant?
Had there occurred a "hit and run" trigger (eg, pathogen, vaccination reaction)
that is no
longer present even as the autoimmune process continues?
2. The text is excellent for persons wanting in-depth overviews of CNS
immunology.
Teresa
ps: If in its entirety, this post may be forwarded hither and yon.

In my opinion, a concept very important to autism is expressed in an informal
paper first
presented into the autism list of St. John's. The gist of the paper is that
pathogenic
colonization (of intestinal tissue) during early infancy leads to chronic immune
weakness
against that pathogen(s). This concept (and its supporting citations) may
account for some of
the kids with chronic colonizations within mucosal tissues.
Title:
NEONATAL GASTROENTEROLOGY & AUTISM IMMUNITY:
Intestinal microflora, pathogens, and permeability; CD5+ B-cells and IgA
Abstract:
CD5+ B-cells are considered to be among the first immunological cells to appear
in
the developing embryo and are thought to play a special postnatal role in the
gastrointestinal tract (gi-T), wherein distinctions must be made between normal
and
pathogenic microorganisms.
Neonates have an extremely limited range of nascent microflora and, as a
result, are susceptible to colonizations by pathogenic microbes present in the
birth
canal, gi-T, and/or in the environment during the days, weeks, and months
subsequent
to birth.
The duration of susceptibility and the likelihood of pathogenic
colonization
can be increased by antibiotics, which are known to be capable of killing
intestinal
microflora. If pathogenic microbes are present in sufficient quantity subsequent
to
birth, what the early intestinal CD5+ B-cells perceive as "normal" can bias the
child's immunoreactivity to those specific intestinal pathogens. One result can
be
increased susceptibility to future colonizations that can be non- systemic,
subacute, ongoing infections localized to the gi-T.
Depending upon the child's specific pathogenic gi-T microbes, such
infections
are able to modify gut permeability and, in some cases, can result in pesistent
release of neurotoxins, some of which are known to migrate into the central
nervous
system.
Volumenous anecdotal data from families with autistic children suggest the
existence of (i) many cases of altered gi-T permeability, and (ii) possibly
somewhat
fewer cases of persistent colonizations by specific, pathogenic bacteria, fungi,
and/or viruses capable of negatively influencing the central nervous system.
Oftentimes, severe dietary modifications and/or antimicrobial regimens
result
in significant alleviations of the child's autistic traits. The early-in-life
shaping of the CD5+ gi-T repertoire may well be a crucial causal component in
the
development of some autisms and autistic-like traits. Ramifications of verifying
an
early CD5 role range from prevention to better treatments as well as to
increased
understandings of possible etiologies in some cases of autism.
URL (wherein can be enjoyed the citations)
http://www.jorsm.com/~binstock/cd5-iga.htm
Teresa Binstock
Researcher in Developmental & Behavioral Neuroanatomy
ps: If in its entirety, this post may be forwarded hither and yon.

Sunday evening, AutismNet distributed a series of posts about soy. Articles
ranged from history
to processing to nutritional content to anti-nutritional content to various
effects. Several of
the articles contain citations, two conveyed information distributed by the Am
Acad of
Pediatrics (AAP). The articles (in toto) are long. Here are the titles of the
posts, and the
two AAP-related posts are included hereinbelow in their entirety. I don't know
(i) if AutismNet
archives can be viewed by the general public, or (ii) if the entire series of
posts ought be
entered serially into this discussion group (or into its reference files).
Why Formula Milk Should be Illegal
Soy Concerns
Dangers of Soy Products
Soy and the Brain
Digestive Enzymes
FindArticles - Known Contaminants Found in Infant Formula
Why Infants Should Be Kept Away from Soy Products
AAP - Alumimun Content in Soy-Based Formula
http://www.aap.org/policy/01263t1.htm
Formula-fed babies and repetitive behaviors
http://www.childthai.org/ciec/c0112.htm#c0111
AAP- Soy Protein-based Formulas
http://www.aap.org/policy/re9806.html to view the entire article.....
Soy Protein-based Formulas: Recommendations for Use in Infant Feeding
(RE9806) AMERICAN ACADEMY OF PEDIATRICS
Committee on Nutrition
ABSTRACT. The American Academy of Pediatrics is committed to the use
of maternal breast milk as the ideal source of nutrition for infant
feeding. Even so, by 2 months of age, most infants in North America
are formula-fed. Despite limited indications, the use of soy protein-
based formula has nearly doubled during the past decade to achieve
25% of the market in the United States. Because an infant formula
provides the largest, if not sole, source of nutrition for an
extended interval, the nutritional adequacy of the formula must be
confirmed and the indications for its use well understood. This
statement updates the 1983 Committee on Nutrition review1 and
contains some important recommendations on the appropriate use of soy
protein-based formulas.
Excerpt...
"....Severe gastrointestinal reactions to soy protein formula have
been described for
disease seen with cow milk protein in infancy $#151; enteropathy,
enterocolitis, and proctitis. Small-bowel injury, a reversible celiac-
like villus injury that produces an enteropathy with malabsorption,
hypoalbuminemia, and failure to thrive, has been documented in at
least four studies.60-63 To date, those afflicted have responded to
the elimination of soy protein-based formulas and are no longer
sensitive by 5 years of age. Severe enterocolitis manifested by
bloody diarrhea, ulcerations, and histologic features of acute and
chronic inflammatory bowel disease also has been well described in
infants receiving soy protein-based formulas.64-68 They respond
quickly to elimination of the soy formula and introduction of a
hydrolyzed protein formula. Their degree of sensitivity to soy
protein during the first few years of age can remain dramatic; thus,
casual use of soy-based formula is to be avoided.68,69 Most children,
but not all, can resume soy protein consumption safely after 5 years
of age. In addition, up to 60% of infants with cow milk protein-
induced enterocolitis also will be equally sensitive to soy
protein.68-70 It is theorized that the intestinal mucosa damaged by
cow milk allows increased uptake and, therefore, increased
immunologic response to the subsequent antigen soy. Eosinophilic
proctocolitis, a more benign variant of enterocolitis, also has been
reported in infants receiving soy protein-based formula.70-73
These dietary protein-induced syndromes of enteropathy and
enterocolitis, although clearly immunologic in origin, are not
immunoglobulin E-mediated, reflecting instead an age-dependent
transient soy protein hypersensitivity.74 Because of the reported
high frequency of infants sensitive to both cow milk and soy
antigens, soy protein-based formulas are not indicated in the
management of documented cow milk protein-induced enteropathy or
enterocolitis. ..."

Would this chemical be useful
for our kids as an Immune regulator?
Has it been tried?

Kay,
Our son has been seeing Dr. Goldberg for almost five years now. The
bottom-line is that we have a dramatically different child today than we did
five years ago. The transformation has been gradual but profoundly positive.
His performance and abilities today far exceed what we were told previously
by many, well-intentioned professionals. Knowing what this journey has taken
and has given back, I wouldn't hesitate to strongly recommend Dr. Goldberg
to anyone whose has a child with learning, attention, and/or communication
challenges. There are no overnight successes nor quick fixes but the
patience and perserverance required is worth every moment of uncertainty,
fear, frustration and doubt you'll experience on behalf of your child.
My belief is that the greatest risk we as parents can make is in DOING
NOTHING or believing that these challenges will pass or ameliorate with
time. They rarely do and the time to act is NOW. For every moment is
precious in your child's development and as the saying goes, " Time is
precious and every moment that ticks away, is lost opportunity to learn,
grow and heal."
Put aside concerns and trust your instincts as a parent. You are in good
hands with a physician that truly cares about our children and their
futures.
If you'd like to talk further, e-mail me. I am also in the greater Chicago
area, Crystal Lake, to be specific.
Pat

In a message dated 3/7/01 11:34:59 AM Eastern Standard Time,
Kkscharste@... writes:
Does anyone remember about 15 or so years ago when it was widely reported on
the news--not the internet--that aspartame could cause all kinds of problems
with children? I was young and in college at the time, so I didnt pay much
attention except to make a mental note to never give aspartame to any child.
It was a few years after the report that sacchrine might cause cancer.
Tracy

I am scheduled to take my son to see Dr. Goldberg in May. He is 2
yrs.old. I was just wondering what kind of success other parents
have seen with their children and what kind of statistics there are.
My son doesn't talk yet, he just babbles. He is receiving speech and
o.t. 2x/week. He has other developmental delays as well. If anyone
can tell me of their experiences and offer good advice about therapy,
etc., I would really appreciate it. I live in Chicago. Kay

Don't quite understand. Are you wanting to raise money for NIDS or for
Stoneybrook? Kathy NIDS Coalition-Northern New York Chapter

Hello group, I would like to post a fundraiser on the list, as many of you
have read the paper yesterday about the knew program at Stonybrook hospital,
for Autism. Please help out, If anyone need information on please email me
Denise Macri

re "internet myth" about harmfulness of aspartame: I was cautioned by my
children's doctors about aspartame in light of changes they'd seen in their
patients. Just because a causal relationship of harm is not PROVEN does not
mean it does not exist.
Kate

RE changes with aspartame: I THINK side effects include headache, focusing
problems (inattentiveness) , hyperactivity, irritability---it's been a long
time since we discussed it.
Kate

Need to know if anybody has anything on Autistic Adults treated with
Dr.Goldbergs protocol. If so, what were the results?
Regards,
Chris

Diet Soda usually has aspartame in it, which I believe is very bad for you
even if it is "natural". It would be best never to give any child soda of
any sort, and certainly not diet soda. Of course, if your child is a
teenager you may not have the control over the situation you once had.
martha

NO, the May 5th and 6th 2001 conference on biological
treatments and autism is in Pontiac (Detroit)
Michigan. It is half the cost of DAN and longer time
per speaker (Wakefield, Shattock, Pangborn, Cave,
Barese, and Lewis). Call 248-706-0460 or go to
www.autismndi.com (scroll down to see future
engagements, then click on "May 5th and 6th".
The official DAN conference is the weekend of May
11th. As far as I recall, Wakefield and Shattock will
not be therd, but quite a few other 'headliners' will.
Either way, lots of learning available!
beth

Hi Everyone!!
Has anyone found their child to get more hyper after
giving them Diet Soda? I am wondering about the
phenylalanine in soda. Please respond with any
stories and/or beliefs on diet soda for our NIDS
kids. Thank you in advance.
Michele Davies

We tried to use this stuff in the 1980's... the problem is its ability to
make yeast grow at an alarming rate due to it's natural sugar content.... It
sounded great to me too! but as we tried it in many it caused more problems
than help...
Elyse Goldberg

You can't unsubscribe by mailing to the list, you must do as follows:

Hello Peter,
I would like to recommend that you go to
www.immuneinstitute.com and let this guide you through some of the questions
concerning our own immune system as well as www.my4life.com/help4theworld
maybe this can help with your understanding about the immune system and how
it controls alot of the body and Diseases.
Sarah

Can someone tell me when the DAN conference is this year? Is it already time?
Have I missed it? I was thinking it was in Atlanta, which is driving distance
from me.
Thanks in advance,
Trina

Trina,
This year the DAN group is having a Spring Conference in addition to
their annual Fall conference. The next conference is in May in Atlanta.
You can find more info on the Autism Research Institue website,
www.autism.com/ari under the DAN info.
Vicki

Have I missed it? I was thinking it was in Atlanta, which is driving distance
from me.

I need to be removed from this list.

Garlic tackles child infections Thursday, 1 March, 2001, 00:21 GMT
http://news.bbc.co.uk/hi/english/health/newsid_1194000/1194985.stm
By Joanne Ross in Cape Town
South African researchers may have found a
simple and effective way of tackling dangerous
infections - garlic.
The Child's Health Institute in Cape Town has
found that garlic has antifungal and antibiotic
powers.
Sid Cywes, Professor of paediatrics at the Red
Cross Children's Hospital, discovered the
garlic's power by chance while indulging in his
favourite pastime, breeding and hybridising
disas, an orchid type plant common on Table
Mountain and the environs of Cape Town.
The beakers storing his cuttings became
infected with a fungus. Consulting an old
reference book, he tried garlic solution to
control it.
Astonishing result
The effect was astonishing and he immediately
wanted to try it on human infections.
He and colleague Peter de Vet are now ready
to try the formula on the hospital ward.
Mr de Vet said: "I make it two parts water to
one part garlic, and then put it in the
centrifuge to get rid of the lumps."
"The aqueous solution is then administered to
babies and children either mixed in with their
milk bottle or some orange juice."
In the burns unit, two millilitres of the garlic
solution are administered every four to six
hours.
"They don't like it, sometimes they
complain about the taste or the smell, but
there are no other side effects."
The garlic is used in conjunction with
antibiotic creams in the
burns unit, as it has yet to undergo a full
clinical trial, although Mr de Vet says the
results in reducing infection have been very
encouraging.
"We use it to treat children that are resistant
to multi-action antibiotics, and children that
have been on antibiotics for a long time and
have developed oral thrush, with great
success."
It is even proving to be effective on
streptococcus infections, something that could
have profound implications in a country where
incidence of HIV/AIDs is one of the highest in
the world.
Mr de Vet is hoping to start full clinical trials on
HIV babies with candida infections in the near
future. However, those who hope that an
extra bit of garlic sauce on their spaghetti
might help will be disappointed.
The active property of garlic, allicin, is only
released on crushing and is destroyed by the
heating process, so the garlic must be taken in
its raw and somewhat smelly form.
If you visit the URL, you will find links to additional articles:
09 Jun 00 | Health
Researchers target garlic mystery
03 Oct 00 | Health
Garlic 'protects against cancer'
06 Jan 00 | Health
Tackling the misery of flu
And for further information, garlic has long been realized to have anti-pathogen
activities.
See the inexpensive but informative book: Herbal Antibiotics, by Stephen Harrod
Buhner.

Eeecsh! I always forget the list won't take forwarded messages.....Here's
the scoop.
Sharon
Listers, my apologies if you've seen this already. Signing this petition
takes less than one minute. Please consider passing it along to your
friends who aren't necessarily on autism listserv groups.
The National Campaign to Fully Fund I D E A
The Concord Center #315 10 Ferry Street Concord, NH 03301
National Petition
I the undersigned, a citizen of the United States of America, hereby request
the President of the United States and the Congress to fully fund the
Individuals with Disabilities Education Act, particularly Part B (Grants to
States) at 40% of the average per-pupil expenditure in public elementary and
secondary schools in the US as outlined in Sec 611. Currently, the federally
funded share is 13%. This amount falls far short of the funds needed to
assist States in providing special education and related services to
students with disabilities
Here's the url:
http://www.ncffi.org/petition.asp
Thanks.
Ron Kincaid

just remember that Dr. G says it's much more important to take things out of
the kids then putting extra things in them. Things like Echinacea, for
example, are counterindicated for our children because they FIRE up the
immune system which in the case of an autoimmune illness is the wrong
approach and can exacerbate problems. (it even says on some labels, "not for
use in autoimmune illness") But I certainly understand that you are
interested in helping your child!

Is anyone having trouble getting into chat room site this evening? Rosemrie

Has anyone out there used bee pollen or royal jelly themselves or with their
children? I have been reading about it, and it touts itself to be an immunity
builder and many more things. It sounds great. I wonder if it would benefit
our kids any? I know, it sounds a little groovy. But, there are a ton of
websites and articles about it. Check it out.
I told my husband that we need to be trying to take good care of ourselves so
we can, God willing and barring any terrible accidents, be around for a long
time to take care of Landon, our autistic son. Don't get me wrong, I am trying
EVERYTHING I can to "cure" him or at least make him independent. I am pumping
him full of supplements and etc. It occured to me that he'll out live us all
and have no one to make sure he's taken care of in his adulthood or old age!!
We parents need to be taking the supplements and vitamins so we can be here for
them. Only God has the knowledge of whether we'll be here in 20-50yrs. But, we
can at least do the best we can. OK, I know I am sounding morbid. I guess I'm
having one of those days, HATE AUTISM, FEEL FAT, BAD HAIR, HOUSE A MESS, SCHOOL
DISTRICT BEING DIFFICULT, HUSBAND NOT UNDERSTANDING, ........ Forgive me for
ranting. But, I am serious about the bee pollen. Does anyone know much about
it??
Trina

This is a little off subject however, did anyone see the Progressive Health News
magazine, issue Jan. 2001. There is a very important article in that issue
about Transfer Factor Plus and AIDS and the research study. It is quite
amazing. I hope that everyone will try to find that issue or listen tonight,
Monday to a conference call about this article at 10 PM EST on toll free
1-800-261-3228.
Thanks
Sarah

Sorry ...it didn't go through first time.
Sharon
FYI:
Congressman Dan Burton is holding IDEA hearings focusing on the education
children with disabilities, especially autism, and a number of parents and
professionals will be testifying. It is scheduled for Wednesday, February
28. Check out www.cspan.org for the times the hearings will be televised and
to see if it will be on cspan1 or cspan2.
Maureen in Tennessee :-)

Below are voluntary bios re ME. I'd be delighted to do a presentation in the
Great Lakes area sometime this year on parent advocacy and assertiveness
training.
Marie A. Sherrett
13934 King George Way
Upper Marlboro, MD 20772
Home Phone: 301-627-3042
Home E-Mail: virri345@...
Work Phone: (202) 756-8208
Work E-Mail: msherrett@...
MARIE A. SHERRETT is Immediate Past-President of the Prince George's County,
MD, Chapter of ASA, having served in that position over five years. She
began assisting parents as Co-Chair of a Mothers Support Group in Tampa, FL.
There she attended community-based parenting classes. She is or has been a
member of many advocacy-related organizations, such as the MD Education
Coalition; Parent Information Network; Parents Place of MD; Parent-To-Parent
Connection; Family Research Council; FIAT; Autism Research Institute; Center
For the Study of Autism; Society For AIT; Georgianna Foundation; Family
Voices Coalition; CAN; DAN; NAAR; National Association For Year Round
Education; Family Education Center of Southern MD; National Association of
Child Advocates; NPND; CEC; Child Care Action Coalition; ACES; MD Committee
For Children; COPAA; MD Respite Care Coalition, Inc. and MD CASA, Inc. She
represents ASA for its Autism Awareness In Public Schools Campaign.
She has attended conferences by LRP Publications, Future Horizons, Inc., NY
Schneider Children's Hospital and THE WASHINGTON POST. She has been a member
of many education-based coalitions such as the P. G. County, MD Task Force On
Year Round Education and those about local and statewide advocacy efforts.
She routinely networks with other organizations in person and on the Internet.
She makes numerous presentations yearly to local and national groups, HS and
college students, teachers, medical providers, School Board Members and PTAs
on autism, PDD, SSI, child support, child safety, school system and
recreational budget issues about those with developmental delays. With the
National Association of Working Women (9to5), she speaks about working women
issues, networking with the Labor Department and AFL-CIO. She is often at
The White House, on Capitol Hill and Boards of Education. July, 2000, she
was on the parent panel, "Advocacy For Systems Change" at the ASA's Atlanta
Conference. July and August 2000 she hosted foreign students from the
Republics of Abkhazia and Georgia and the Country of Japan for YFU. November
2000 she spoke at the Autism Society of Indiana Conference on parent advocacy.
She regularly speaks to the media, giving radio, TV and newspaper interviews
on advocacy, child support, special education and working women matters,
particularly about issues for single parents of those with developmental
delays.
She has been a legal secretary since 1972 and is the parent of Mark P.
Sherrett; age 20 (who has autism) and Daniel V. Sherrett, age 17.
Marie A. Sherrett
13934 King George Way
Upper Marlboro, MD 20772
Home Phone: 301-627-3042/3987
Home E-Mail: virri345@...
Work Phone: (202) 756-8208
Work E-Mail: msherrett@...
Tampa Co-Chair: Mothers Support Group/Moms Helping Moms
Classes: Facilitator Training; Parent Effectiveness Training;
Systematic Training For Effective Parenting;
Parenting Your
Learning-Disabled Child; Parent Mentoring
Past/Present Autism Society of America/P.G. Cty. Chptr Past-President
Memberships: C.H.A.D.D.; MD Ed. Coalition; Parent Information Network;
Parents
Place of MD; Parent-To-Parent Connection; Family
Research
Council; ARI; Center For the Study of Autism;
Society For AIT;
Georgianna AIT Foundation; Family Voices CAN; DAN;
NAAR;
National Assn. For Year-Round Ed.; So. MD Family
Ed Center;
National Assn. of Child Advocates; NPND; CEC; LDA;
Child Care
Action Coalition; ACES; MD Committee For Children;
COPAA; MD
Respite Care Coalition, Inc. and MD CASA, Inc.
Participant: Town of Cheverly Action Coalition; Richmond Autism Conf.
P.G.Cty., MD Year-Round Ed Task Force; LRP, Future
Horizons,
NY Schneider Children's and MSDE Conferences; CNN;
News 5, 7
& 9; Bowie and P.G. Cable; 88.5FM; WASH. POST
Nonprofit
Workshop; MD CASA Committees; YFU: 2000 Teenage
Foreign
Student Summer Program; ASA: Awareness In Public
Schools
Presentations: Cheverly Town Council (MD): Child Safety Issues
P.G. County Board of Education: Autism/PDD Needs
(7)
P.G. Community College Parent Group: Four (4)
MD Nat. Capital Parks and Planning Comm.: Join
ASA Chapter
P.G.Cty. Council Executive Committee: School Budget
P.G.Cty. Task Force/Ed. Funding: Special
Education Issues
UMD (College Park) Graduate Students: Autism/PDD
Trinity College (D.C.): Autism/PDD (Two)
P.G. Cty. School System Psychology Department:
Autism/PDD
UMD (Baltimore) Behav. & Develop. Pediatrics:
Autism/PDD
MD Fam. Sup. Network, P.G. Infants/Toddlers;
Autism/PDD
P.G. Cty. Comm. For Those With Disabilities; Town
Forum
Mount Oak Volunteer Staff and Single Parent Group:
Autism
Mellwood Vocational Institute (MD): Autism/PDD
UMD Parent Support Group: Parent Advocacy Training
Executive Board; P. G. Cty. Chapter ACLU (MD):
Autism Needs
P.G. Cty. Schools Management Panel (MD):
Autism/PDD
P.G. Cty. Nurse Managers (MD): Autism/PDD
National Parent Network On Disabilities (VA):
Youth Leaders
Georgetown University Child Development Center
(D.C.): Autism
TASH (IL): Parent Assertiveness/Advocacy Groups
James Harrison Elementary PTA: Autism/PDD
Laurel High School (MD): Career Choices In Law
Firms (2)
ASA (GA): Parent Assertiveness/Advocacy Groups
aboutparenting/ParentingFromtheHeart.com (Chat
Guest) (2)
Washington County ASA Chapter (MD); Parent Advocacy
Northern VA ASA Chapter (VA); Parent Advocacy
Autism Society of Indiana (IN); Parent Advocacy
Groups
P.G.Cty. Public Schools (MD); ASA Awareness
Campaign (2)
SUBMITTED: P.G. Early Childhood Conference: Autism/PDD Awareness
ASA (CA); Parent Advocacy
SCHEDULED: Ardmore Enterprises, Inc.: Autism/PDD re adults with the
disability
MSDE/DORS: Autism/PDD re adults with the
disability

Teresa - what is the most reliable test(s)for detecting a chronic,
low-level HHV6 infection that is not being immunosuppressed (as
opposed to elevated titers from a somewhat recent infection properly
being immunosuppressed)? Dr. Brewer in Kansas city likes ViraCor
labs and I believe they have a newer/better test out. Do you have
any information on this?

I will be out of the office for a half a day, Tuesday 2/20 through Friday 2/23.
I will be in the office daily starting at 1pm.
Thank you

Dear Trina
Most children who do not have good language suffer from apraxia. If his
receptive language is pretty good but not his expressive I would do two
things: Teach him sign language as quickly as possible, and find a
speech pathologist who knows about apraxia. I got a curriculum called
Oral Apraxia made easy for preschooler and I have been implementing it
at home. My son's speech is not spontaneous but he can read at a 1st
grade level. His speech is choppy but all the sounds are coming
together. The signing helped relief his immediate needs and frustration.
His signing is spontaneous. Next I am trying the pecs for expressive
language.
I understand your frustration between ABA and speech therapy. We went
through that and it was not till I stopped the ABA speech and took over
as his main speech therapist using the above curriculum that I started
seeing results.
Best of wishes.
Mercy

Again, sorry to cross post, but I need some clarification. My son currently
only gets speech therapy via the school district, which is not good. I pulled
him from the local speech therapy (private) because I did not think it was
helpful, and we are doing ABA, and the two were against each other. My son,
though, does not have good language, in that he does not use full sentences, and
basically isn't interested. I feel he may actually need language therapy
instead of speech therapy. Any suggestions?
Trina

In a message dated 2/10/01 12:22:19 PM Pacific Standard Time, 1raptor@...
writes:
Thank you Lenny. Your objectivity and quest to help our children is greatly
appreciated.
Tina M. Hendrix
CureNIDS2000@...
President, NIDS Coalition, Northern California
Neuro-Immune Dysfunction Syndromes
Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,
etc.

I may be dumb but it seems to me that a vaccination
induces an immune response, and this response
reduces the ability of the immune system to respond to,
or fight HIV or any other virus or unwelcome visitor. ie the
immune system can only do so much, so that to fight a
new invader it reduces the fight against the old nasties.
This is probably naive, but would certainly help explain
the autism sometimes produced after the triple vaccine.
Peter Moses.

Subj: Immune Responses in Children With Regression Autism/ Autism &
Parkinson's
Date: 2/13/01 10:41:12 PM Central Standard Time
From: featnews@... (FEAT News)
Sender: FEATNEWS@... (FEAT Daily Newsletter)
Reply-to: <A HREF="mailto:featnews@..."
To: FEATNEWS@...
FEAT DAILY NEWSLETTER Sacramento, California http://www.feat.org
"Healing Autism: No Finer a Cause on the Planet"

I have TMJ but only am bothered by the pain now when I am at the dentist and
have to hold my mouth in an open postion for an extended period of time. I
used to have quite a lot of pain, along with carpal tunned pain, when I was
under a lot of stress, immune onslaught etc. If I get a reasonable amount of
sleep, eat good (avoid the Gberg no no's ), take vitamins and herbs (Nature's
Sunshine VS-C), I am symptom free. My dentist told me if I notice myself
clenchin