Michael J. Goldberg, M.D., F.A.A.P.
5620 WILBUR AVENUE, SUITE 318
TARZANA, CALIFORNIA 91356
TELEPHONE (818) 343 - 1010
FAX (818) 343 - 6585
Email –
office@neuroimmunedr.com
On the web:
www.neuroimmunedr.com http://mat.org/
ADHD/ADD - LEARNING DISABILITIES
IMMUNE DYSFUNCTION
CFS/CFIDS
AUTISM
April 6, 2000
Gentlemen,
I am Dr. Michael
Goldberg, a Fellow of the American Academy of Pediatrics and Director of
the non-profit NIDS Medical Board and Research Institute. I wish to
thank all of you for giving me the opportunity to speak here today and
for taking the time to examine the urgency of this epidemic.
I have put together a
packet of articles detailing my scientific hypothesis and current
treatment philosophy. I suggest they be included in the record. I have
also provided information on the emerging science and technology
describing Neuro Immune Dysfunction whose common pathway is involved in
many immune or autoimmune diseaseas including the development of the
Autistic Syndrome. We finally have an understanding of how the brain
interrelates with the endocrine and immune system. We are confident that
we can apply this new understanding rapidly to evolve a treatment plan
within the next six to twelve months, through an unprecedented blend of
private enterprise and government-supported research.
The purpose of this
hearing is to investigate why we have a large increase in this
phenomenon that we have called autism. But to understand that, one must
step back and look at the increased understanding and incidence of
auto-immune disorders across-the-board, from the early/mid 1970’s, when
I completed my medical training, to the present day. All one has to do
is look at the medical literature to realize that nearly every disorder
we have associated as immune connected, immune-mediated, defects in the
immune system - lymphoma, multiple sclerosis, Alzheimer’s, lupus,
Ulcerative colitis, rheumatoid disease, and even aging - have all become
recognized as in part autoimmune diseases or illnesses where the
friendly fire of our own bodies causes the damage as my colleague Dr.
Galpin, an infectious disease and immunology authority, often is quoted
to say.
If we are going to save
this generation of children from a lifetime of suffering the incurable
stigma of being diagnosed with autism and other cognitive delays, we
must rapidly realize that all of these disorders result from a treatable
rather than untreatable disease process. As written in the enclosed
articles, and as a pure basic fact of science, it is medically
impossible to have an epidemic of a genetic or developmental disorder.
Further, while many have spoken of an “epidemic of autism,” the truth
is: the disease process many of these children have is not autism (as
taught to physicians 30 – 40 years ago).
If a child is born
developmentally miswired, “damaged”, something happened in utero. But,
a child cannot learn to speak and use language and then lose these
abilities if the cause of their disorder is developmental, structural,
etc. Such a child cannot respond to treatment and become a regular
child once more, as has been the case in my practice over and over
again, if the cause of their disorder is a “fixed” process, congenital
or genetic disorder. It has been repeatedly apparent that 4, 5, 6 yr.
old children are starting over where they left off at 18 months, 2 years
of age. Parents who were told their children would never talk, could
never be social, could never have feelings, now have children who are
normal functioning or who are still struggling to catch up and get back
to that fully normal functioning child, in either case these parents can
see or are beginning to see a future for their child. It is my intent
and hope in the time I have here, and through the articles I have
submitted, to sow the realization that we are not talking about saving
the next generation of children, but rather that we must focus our
efforts on saving this generation of children before it is too late.
The ramifications are enormous.
At the end of a
research symposium in October 1997, one which brought together top
researchers from around the country to discuss Alzheimer’s, adult
dementias, social brain, and Autism/Pervasive Developmental Disorder
(PDD), this statement was made: if a child developed normally during the
first twelve, fifteen, eighteen months of life, developed any
language/words, and then somehow went into the autistic spectrum, it was
a 100 percent certainty that the process had to be immune/viral. IF a
child developed normally the first 12, 15, 18 months of life and had NO
words, 99% it was an immune / viral process, and no one there could
rationalize any other possible mechanism.
While there is ongoing
controversy regarding past brain biopsy findings and their implications,
if any, to this generation of children, we do have NeuroSPECT Scans,
which show reproducible, quantifiable blood flow in the brain. Blood
flow corresponds directly to function. When NeuroSPECT Scans of
children diagnosed as autistic/PDD have been correlated with MRI’s and
CAT Scans, the combination consistently shows no pre-existing damage to
the brain, but rather points toward an immune shutdown consistent with
that found in adults with Chronic Fatigue Syndromes and other adult
dementias and with children diagnosed as quiet ADD and mixed ADD.
I stumbled into the
field of autism somewhat by accident. My wife had had Chronic Fatigue
Syndrome for over ten years. Jokingly, my son asked me "Why are you
sending Mom all over the country to doctors? Why don't you just fix
her?" That began my journey into clinical research. It rapidly became
apparent we were dealing with some component of the immune system, an
autoimmune like reaction. During that time, as I was investigating all
options for my wife, a few “Autistic” children were referred to my
practice. Much to my surprise, these children had blood work
comparable to that of my wife and other adults with this undiagnosed
disorder, and to that of children I had been seeing diagnosed with quiet
ADD and mixed ADD. I remember thinking then, “What could the immune
system have to do with autism?”
Paralleling this,
beginning in the 1980’s was the initially slow, now epidemic incidence
of disorders in children labeled as Autism/PDD and the increase of
reports of autoimmune diseases in the animal literature, of altered
ecological balance, immune system abnormalities in various species. We
either have to assume that this increase of disorders in the human
population is mass-hysteria, mass-psychosis, schizophrenia, and/or
behavioral developmental disorders in children or we must step back and
realize that maybe we have a large number of adults and children
suffering from a disease process that is affecting how their brain and
nervous system functions, in ways that physicians had never understood
(or had the technology to understand). I have family after family
within my “new” practice in which there is a mother or father with
Chronic Fatigue Syndrome, an older child with ADD/ADHD, and a younger
child or two with Autism/PDD. As noted, unless we assume this is all
random, there is unfortunately a logical connection between the above
disorders and their rapid emergence as a crisis.
We are looking at what
appears, supported by increasing data and reports in the literature, to
be auto-immune, Neuro-immune disorders or what my associates and I have
termed Neuro Immune Dysfunction Syndromes or NIDS. If you are an adult
with an intelligent, developed brain or an older teenager, when this
process attacks, you will likely end up being diagnosed with the
illnesses known as Chronic Fatigue Syndrome, Adult ADHD, etc. If you
are a younger child, five, six, seven, or eight years old when this
process is triggered, with some cognitive, social and language
capabilities already developed, you will likely develop what is called
quiet ADD or mixed ADD. If you are twelve, fifteen, eighteen months
old, however, when this process begins, you will have barely begun to
develop cognitive, language, and social skills and you will wind up with
what has been called Autism/PDD.
The good news is that
this concept is supported by common sense medical logic. The bad news
is that we must unify and focus efforts or we will continue to see more
adults that are supposed to be paying taxes and earning a living,
finding themselves on welfare, unable to function, unable to produce.
Even graver is that if nothing changes, we are currently raising an
entire generation of children to this fate.
There is hope. Research
from many prominent institutions support the idea that the brain is
pliable at least into adolescence, maybe into early adulthood. It has
been my rewarding experience as a pediatrician to see five,
eight, ten, and even a twelve year old boy who could not talk, begin to
use language. Parents who were told their child would never be
independent, never be able to earn a living, and who one day might have
to be placed in an institution, have seen their children become top of
their class academically. I have children within the practice scoring
in the 97th, even the 99th percentile on California and Illinois state
testing.
The potential multiple
triggers for this illness, we are calling NIDS, will need many, many
years of ongoing research to learn how multiple factors such as stress,
viral, or environmental may play a role. The key is to focus treatment
efforts, rapidly, effectively – NOW – to keep from losing an entire
generation of children while the ultimate “answers” are still being
investigated. We can use technology to accurately define “subgroups” of
these children and adults now, setting up the possibility of new therapy
approaches in as little as the next 6 – 8 months, rather than after
years of further investigation and study. Technology exists to help
these children and to help many of the adults out there to become
productive individuals again. At this time, as noted in the enclosed
articles, I have been using a combination of diet elimination,
anti-viral therapy, anti-fungal therapy, and application of low-dose
SSRI’s (Selective Serotonin Re-uptake Inhibitors), based on our
NeuroSPECT findings, immune markers, and viral titers in these
children. Thankfully, I have had many children return to normal and
above-normal functioning, but this is not yet fast enough, simple
enough, or perfect enough. This may be a holding approach thus far
wherein balancing the many neurological immune regulating proteins known
as cytokines and chemokines may in turn rebalance behavior itself. As
many others are noting, I would propose there is a future for logical
application of “alternative” medicines and combination treatment
protocols with good pharmaceutically pure agents and medications.
In 1996, I was a speaker
at the Autism Society of America Conference. Approximately 2000 parents
and professionals gathered for this event. My wife, milling around,
questioned me "Where are the doctors? The M.D.'s?" Sadly she had
figured out the truth in a matter of minutes. The medical community had
abandoned these children once they became labeled as "Autistic." These
children were regarded as defective, mentally un-trainable, even
retarded!
Sadly, with the label of autism, many children were not even
given a simple blood test for anemia/iron deficiency (a
simply-counteracted, possible cause of brain dysfunction). Reviewing
case after case of children labeled as having Autism/PDD, I am horrified
at how little has been done medically for these children, as they are
not considered to be “normal.” Their pain, their misery, their
"illness," goes essentially unrecognized. Many are though of as
insensitive to pain, but how many are actually just “numb” to the pain
that their brain/system is constantly in? Simple steps that could be
taken, are not taken to help these children or their parents.
I have been fortunate to work with Dr
Israel Mena and Dr. Bruce Miller, who helped show through NeuroSPECT
Scans, that these children had a physiological dysfunction going on in
their brains. For the majority, there was a decrease in blood flow and
function of the temporal lobe of the brain consistent with that
predicted by neuro anatomists. I have many, many more scans that show
the same decrease in blood flow. I would shudder to think of what
dysfunctions you might have if your brain had lack of blood flow in
those areas. In fact, if one listens to an adult with Chronic Fatigue
Syndrome, or the "typing" of a child unable speak, one can only begin to
imagine how truly horrible this is.
Many of these children have a low number of Natural Killer
(NK) cells, which are a more primitive immune system cell, responsible
for clearing “radicals” in our body, clearing foreign cells / cancerous
cells, and considered a strong marker for a healthy or stressed immune
system. These cells, when low in number, are now linked to viral
reactivation in many auto-immune illnesses, and low NK cells has become
an extremely strong marker in a subgroup of these children with NIDS.
Another frequent finding is the likely presence of an active
HHV-6 virus (a human herpes virus) or other related Herpes viruses in
these children. Similar findings are also being reported for various
adult auto-immune disorders and recently even the Center for Disease
Control published an article focusing on our emerging knowledge of HHV-6
related disorders.
The issue of vaccines is
an important one. Again, one must understand the problem in terms of the
new altered immune state (part of the bigger picture), rather than
necessarily the vaccines themselves. Most doctors would agree that not
vaccinating in this country would be a disaster. As I remember the
Academy of Pediatrics and the fights in the 70's over the DPT vaccine,
in the end the statistics of children supposedly damaged by the vaccine
were no more then the "natural" incidence in life or 1 in 300,000. In
fact in England and Japan, where for a time the DPT vaccine was stopped,
the incidence of pertussis (whooping cough) resulting in serious illness
and death, far exceeded any possible “vaccine connection.” Likewise, in
discussing the current “Autistic” / NIDS epidemic, while there may be a
possible "triggering" factor with Rubella, Measles, "multiple" vaccines,
one must understand this as only one of a possible combination of
stresses causing dysfunction, within the concept of a preexisting
"immune reactive” or "stressed" state. Vaccines (by themselves) remain
an unlikely cause of Autism.
BUT injecting common
sense, general awareness of health and appropriate "past" considerations
of separations of vaccines, "stresses", choice of age, etc might save
untold children potential reactions/disasters. Consistent with the
question of whether there is a peculiar or unusual immune reactivity
when a child is younger, waiting till a child is 3 or 4 could not be
faulted, but with ongoing measles outbreaks occurring at times, it is
not something easy to recommend routinely at this time. Infancy
unfortunately represents a child's most vulnerable time to measles (but
there is no real risk from rubella or mumps at that age).
Any injury or loss of a
child that could have been prevented remains unacceptable. There is no
way to adequately console the parent of a lost or damaged child. If
“focused” correctly, we do have the ability to accelerate understanding
and identification of potentially higher risk children. That would help
immensely in considering the risks versus the gains of modifying
vaccination schedules, diet advice, treatment choices, etc. We must
work together with organized medicine and the pharmaceutical companies
as allies to solve these questions, not as” adversaries, fighting to
defend principles, which in the end we all believe in.
It has been my personal
experience within the practice to literally have "high risk" children
with "one foot in, one foot out" of the NIDS disorder, and prevent it
from becoming full-blown Neuro immune dysfunction solely through use of
"preventative" pediatrics. Via dietary eliminations, selective usage of
antihistamines, "bacteriostatic" antibiotics (when indicated),
aggressive allergy prevention and "health maintenance" providing a
simple, preventative program to a seemingly-increasing number of
families with high-risk factors for NIDS. While only an anecdotal
observation, to date, NO family with whom I have instituted a
preventative program for NIDS has had another "autistic spectrum"
disorder child.
The bottom line is that these children have a disease, open to
fascinating research on all its potential causes and triggers, but one
that currently warrants and deserves immediate medical intervention. In
my clinical practice, “miracles" seem to be happening routinely. One
must realize, recoveries and significant cognitive improvements could
not happen IF these children were truly born "defective" - thankfully,
they were not. I have an increasing number of children who have been
with me 2 or 3 years now and as they return to their regular
pediatricians for their annual checkup, their pediatricians are seeing
the children growing better and developing better, motor, body and brain
wise. In a nice manner, while still not understanding this process (but
smiling at the child they see before them), these pediatricians are
advising the parents to continue therapy, as I continue to monitor
medications appropriately.
A child I began treating
at five is now in sixth grade, getting straight A's, was the
Vice-President of his 5th grade class – not how most people view an
autistic child. I have an increasingly large number of these children
where "academics" are the least of anyone's worries for the child. Many
are in regular if not honors classes and many are happy, well adjusted,
indistinguishable from their peers. In reality these children are
likely just the opposite of what this country and the world of medicine
had come to think of them: as retarded, unable to develop fully, with
some hope of compensation, but not real treatment or recovery (for one
can not recover from a developmental disorder). Recovery and
improvement in my patients, as previously mentioned and as explained in
the attached articles, has been accomplished through a combined program
of dietary elimination, anti-virals, anti-fungals, and low dose SSRI's.
I have attempted to do this following good pediatric principles, while
"combining" steps/therapies based on the emerging science of
"Neuro-immune."
This past week a mom came in and told me her 5 yr. old child
(who has been with me about 8 months now), said to her, "Mom do you want
to pretend I can't talk? REMEMBER when I couldn't talk?" We have so
misunderstood and misjudged these children. What harm are we doing to
these children as a result?
If we can channel the technology that we have today and employ
immune modulating agents, we could begin objective testing of new
therapy protocols in as little as 6 – 8 months, with one (or more)
related agents. Immune modulators, will give us the tools to regulate
the Neuro-immune system as has never before been possible, help to
create a "normal," essentially healthy state. A healthy immune system
has the potential to "normalize" brain function, enabling the brain to
turn back on and begin developing again.
If we can focus a
unified effort to identify the specific immune markers (e.g. low natural
killer cells, high alpha interferon’s, high or low cytokine / chemokine
profiles) that will let us understand which patient is the most likely
candidate for which immune agent, separate this “mixed” population of
children into logical subgroups, allowing more rapid understanding of
vaccine or other potential related factors, and if we can proceed with
the linking of a country wide, potentially world wide network of
NeuroSPECT centers, to our already existing database of NeuroSPECT
scans, the immediate pay-off will be to have a chance at saving this
generation of children.
There is good, solid
science in the NIDS Hypothesis. It has been reviewed and verified by at
least four pharmaceutical companies to date. We need to see the
urgency of this situation: we are already spending approximately 13
billion dollars annually on Autism and related disorders and this figure
is projected to be significantly more in the near future. In reality,
if treated young enough, most of these children could still become
healthy, productive members of society, with full, rich lives of their
own. I would dare say, many of these “Autistic” children are in
reality supposed to be this country’s "future" leaders, having starting
off with that capability and background, and not as "defective" children
(as had been previously thought). With the reported 263% increased
incidence of autism in California, and a 500% increase in Florida, among
other statistics, I cannot emphasize enough that we are truly losing a
generation of children.
What may have often been presented to you as
impossible or can’t happen, in reality, can happen, but to occur, we
must approach this as it’s never been done before. In the normal course
of medicine, with multi-million dollars of research, this is a slow
evolution that will take an estimated five, ten years or longer to come
together, to even begin to think of how can we treat this and deal with
it. Within the NIDS Institute, our researchers, who are all
heavily-credentialed, many are involved in current NIH and other
activities and, with the NIDS Hypothesis, there is logic that says we
can take this knowledge, these abilities, unify other researchers in
institutions across the country, using technology, instead of being
limited to colleagues or materials available within a given
institution. We can literally pick-and-choose top people around this
country, around this world to focus on this as the true crisis it has
become. With that ability, we can look at applying these new therapies,
new agents, within the next six months to a year at most. Instead of
thinking about what are we going to do for the future, we can change
this now.
I plead with you, Mr. Chairman and
members of this Committee. These children are supposed to be a
productive part of our country's future, not a health cost and burden.
These children have the potential for full, productive, intelligent
lives; contrary to the old idea, their genetics are not the determining
factor. A child can NOT develop normally, develop some language and
lose it all except in a disease process. We can apply good sound
science and logic to help solve this crisis NOW. Unless we act NOW, we
will continue to lose this generation of affected children, and will
potentially watch the "bankrupting" of our current education and social
system. Today's ill children cannot wait for the "normal" path of
academic science to catch up (it has begun to move in the right
direction, but all too slowly). We must leap forward in a way/model
never done in medicine before. I am extremely fortunate to have three
healthy children and one grandchild. I selfishly want the rest of my
future grandchildren, all of yours and others out there, to have the
same chance.
Thank you.
Michael J. Goldberg, M.D., F.A.A.P.