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"Healing Autism: No Finer a Cause on the Planet"
September 19, 2000
DAN! Conference Notes for Sunday: Diet, Vaccines and Mercury
[If you did not attend the DAN! 2000 Conference in San Diego this last
weekend, September 16 and 17, Steven Gallup's notes will give you a good
overview of the breadth and depth of subject matter covered. These notes
cover many of the Sunday scheduled, and one unscheduled, speakers. For
Saturday's notes, see previous posting.]
Well, DAN! 2000 is over. I've read accounts of previous conferences in
which people said they were exhilarated, but that wasn't my response. For
one thing, I was humbled by the frequency with which the presenters left me
slack-jawed trying to figure out what they'd just said while they forged
rapidly on into even more difficult territory. Must admit I hadn't expected
to be left in the dust so badly. Also, for me the whole thing was an
emotionally bruising experience. Presentations focusing on mechanisms by
which kids are hurt and the way some of our kids perceive the world were
very upsetting for this parent anyway.
I'm very glad at least a few physicians were in attendance, because in
some respects they're the ones best prepared to do something with all this
information. For the rest of us, the conference coordinator noted that,
based on a show of hands yesterday, 70 - 80% of the audience were
first-timers and were therefore probably feeling overloaded. She encouraged
us not to feel guilty for what we haven't done or aren't doing with our kids
and not to try to implement everything at the same time. She mentioned that
the ARI Website has a list of physicians who are at least "DAN!-friendly"
(not necessarily DAN!-savvy) and to avail ourselves of them, because we
parents can't do this stuff effectively on our own.
Anyone who really wants to study what was said there should order the
tapes. (The full set of audio tapes costs $112 + s&h; videos are $49.95
each, or $39.95 each for three or more, or $299 + s&h for all 12. Fax your
order to 888-346-8273 or call 800-669-8273.) But I'm happy to continue
sharing my notes, such as they are, with apologies for the shortcomings.
Sunday morning began with Dr. Baker recapping Saturday's
presentations, and since I didn't attempt yesterday to say anything about
Dr. Gupta's message I'll just cheat and quote what he said: "The role of IgA
in defending us from unwelcome germs and antigens offers a potentially more
potent therapy than IgG and would be more suitable for oral use. Deeper
layers of biochemical problems in autism may center on energy producers
(mitochondria) and energy-dependent structures."
Dr. Baker went on to talk about all the polarizing issues surrounding
us: immunizations (personal health vs public health), use of antibiotics
(disease control vs vulnerability to fungal infections), nutritional
pharmacology vs prescription medications (drugs supposedly being strong and
nutrients wimpy), the argument about who should make risk/benefit decisions
about me and my child (me or "them"), and finally the argument about whether
to treat the disease or the individual.
That latter question was his topic today. Diseases are not really
things we can arrange and sort (the way one sorts his socks). Rather, they
are ideas we form about groups of people who share features. But those
people can differ in revealing ways. What does it mean, for example, if one
patient has an unusual odor? Is that a clue to something? Unfortunately,
there's a tendency not to see factors that don't fit into the construct we
think we have.
One justification doctors may have for this is the need to place
patients in some category for the insurance company. However in medicine Dr.
Baker said labels are not helpful; signs, symptoms, and lab tests are. For
several years he has been developing a branching questionnaire that will
enable us to build portraits of patients that make it less likely to
overlook details that don't seem to fit. He envisions it eventually becoming
a subscription-based service that will "democratize medical information."
Mary Megson, MD then stood up and addressed "Is Autism G-Alpha
Protein Defect Reversible with Natural Vitamin A?" She postulates that
children with autism have blocked pathways in the brain that, for example,
create a disconnect between the visual image of an object and the word for
She talked about elements in family histories that seem to predispose
some children to autism, and listed a lot more than I remember from her
Website (photo-flash sensitivity, high cholesterol, milk allergy, color
blindness, certain cancers [colon, lung, breast, prostate], and diabetes).
These are signals of an existing G-alpha protein defect in the family, and
insertion of another defect (namely, the pertussis toxin in the DPT vaccine)
into genetically at-risk children in these families could be the cause of
Babies who are breast-fed get natural (cis) vitamin A. Babies who are
fed formula get an altered form of the vitamin A molecule (trans). Is this a
deficiency? She seemed to become angry as she discussed the risk faced by
children going into a measles vaccine with low levels of vitamin A, because
that vaccine further depletes their supply. She talked about the effect on
the rods and cones of the eye and said these children live in a world like
an abstract painting. Children who prefer to sit in corners and narrow
spaces do so because only there do they know what is around them. Elsewhere,
their surroundings are just a mass of color. Children who cannot make eye
contact do so because they can see us better using a different portion of
the retina. We're telling them, "Look at me!" when in reality we're telling
them, "Look over there!" Kids who really love to swim may like it because of
the tactile pressure.
Many of our kids' behaviors would make sense, if only we understood
Vitamin A isn't the only answer to this, but it's a piece of the pie.
Her practice has often involved giving bethanechol, but she doesn't
emphasize this. Bethanechol is a medication, and sometimes it isn't
necessary. The next speaker of the day was Jon B. Pangborn, PhD, who spoke
about "Digestive Enzyme Inhibition and Autism." He proposed a model in which
dipeptidyl peptidase IV (DPPIV) is inhibited. This, by the way, is the
binding protein for an important enzyme in purine metabolism and it also
digests a portion of the casein molecule. Actually, it's a class of proteins
appearing in many forms and locations in the body.
Some patients with PKU are autistic, some with Fragile X syndrome are
autistic, some with Rett syndrome are autistic, etc., but the numbers of
these groups are not increasing. The group that has been increasing in
numbers so drastically are those with "inhibited DPPIV/CD26 autism," and
something is happening to cause this change.
What is going on? Various antibiotics can bind and inhibit the action
of the DPPIV molecule, as can abnormal flora in the gut, ethyl mercaptan
(the odor in natural gas), fluorides, pesticides, mercury, lead, and even
zinc. (If an individual does have a problem caused by zinc, and is also
zinc-deficient, supplements should not be given with meals.)
We all have biochemical individuality, and hopefully all the action of
DPPIV won't be disabled in one individual. Depending on how DPPIV isn't
working, the remedy might involve giving the digestive aid peptidase,
avoiding gluten and casein, or avoiding immunologic challenges. Certain
nutrients help the process: B6, B12, folate, serine, as well as DMG. Results
of a 4-week trial showed better socialization, improved speech, better
comprehension, etc. in some individuals.
He mentioned quite a few lab tests that could be needed to establish
whether this is going on in a patient: test for urine peptides,
casomorphines, gluteomorphines, IaG; urine amino acids; lymphocyte
differential; hair element analysis, stool analysis; organic acid analysis;
food and allergy workup; blood cell element analysis; toxic chemical and
xenobiotic assessment; oxidant stress assessment.
[.] Paul Shattock's talk, "Environmental Factors as Triggers for
Autism: Implications for Control and Therapy," was based on the observation
that, in the U.K. a significant increase in autism began with children born
in '84/'85. This has to be the result of an environmental stressor. It's sad
that 90% of the autism research money is going into genetics.
The establishment accepts that there's an increase in the incidence of
some conditions (asthma, cancer, allergies, diabetes, naughty children,
etc.), but for some reason it doesn't want to recognize the increase in
autism. A reasonable person would be frightened to think that in some areas
1 in every 69 boys is now autistic. This doesn't seem to worry the
The explanation for it is a combination of genetic fragility and
environmental factors. Genetic make-ups don't change very rapidly. What
environmental changes have there been? Introduction of new vaccines,
pesticides, heavy metals, toxic fumes, plasticizers in soft drink bottles --
(no, I'll skirt the touchy question of whether the Spice Girls are at
One hypothesis is that food-derived peptides crossing into the
bloodstream and into the CNS interfere with neurotransmission, affecting
perception and cognition. This could happen if a vaccine creates a pathway
creates a pathway through the gut wall, and if something damages the
In urine analysis of Asperger's patients, one peptide keeps turning
up -- one spike in an otherwise rather flat curve. In more serious cases of
autism, there are MANY spikes.
The Sunderland protocol is in three phases: 1. CEASE FIRE: Remove the
source of the problem. A. Try going off casein for 3 - 4 weeks. If there is
no difference in the child, put it back in. B. Now remove gluten for 3
months. 2. PRELIMINARY AGREEMENT C. Look for other foods that could be at
fault (corn? soya? tomato? avocado? beef?) D. Test for vitamins, minerals,
amino acids, allergies. Supplement as indicated. E. Look for parasitic
organisms such as yeast. 3. ACTIVE RECONSTRUCTION F. Sulphation issues
(epsom salts, MSM) G. Enzyme activity (betaine hydrochloride) H. Fatty acids
(evening primrose oil, fish oils, etc.) I. L-Glutamine (an intestinal
nutrient) J. Enzyme supplementation (this can be done earlier) (Bromelain,
Seren-Aid) AND A FEW MORE QUIRKY THINGS: 5-HTP, going pigment-free,
salicylate-free, giving megadoses of B6 and magnesium, hyperbaric oxygen,
cranial-sacral therapy, etc.
Whether we should be trying to remove heavy metals (e.g., chelation)
is still to be decided. K.L. Reichelt, MD, PhD presented the results of
dietary changes to remove opioids from autistic patients. Opioids permantly
change the nature of transport across the blood-brain barrier in animals,
and can explain traits like social indifference. Peptides increase the
uptake of serotonin, which can account for the hyper-sensitivity,
aggression, impulse control problems, and sleep problems of autism. All
children in his study improved significantly. Those few who quit regressed
significantly. Young children changed quickly. Older children changed more
slowly, and after puberty the results were so-so.
Karen Seroussi and Lisa Lewis gave a presentation on how to succeed
with a gluten-/casein-free diet. They said kids most likely to benefit are
those with late onset of symptoms, insensitivity to pain, constipation or
diarrhea, and preference for a very limited diet. This doesn't mean a kid in
another subgroup wouldn't also respond. You could get a urine analysis for
peptides, although testing accuracy is not 100%. ( http://www.gfcfdiet.com
has a list of labs that do it.) Or you could just start the diet and give it
Try to retain anything in the current diet that fits the new diet.
Whenever possible, replicate favorites. Try ethnic foods that are not
wheat-/dairy-based. (Passover is a good time of year to stock up on gf/cf
foods -- anything labeled "Parve" and "Pareve.") Be sneaky to get the new
food in (e.g., make it look like the old food). Avoid refined foods with
large numbers of ingredients.
Understand that presence of opiate peptides is not a food allergy, and
allergy treatments will not enable a kid to go off the diet. If the diet
works, going off it even a little bit will hurt -- there's a big difference
between 98% and 100%.
Because one of the scheduled presenters could not be there, Amy
Holmes, MD then chaired an impromptu "mercury panel" in which several
professionals in the audience gave short talks.
Vera Stejskal, MD of Stockholm spoke of the MELISA blood test to
screen for sensitization of lymphocytes to Hg. Her study shows three times
more sensitivity to mercury and other metals (i.e., increased lymphocyte
reactivity) by autistic patients vs normal kids. This test is not currently
available in the U.S.
Boyd Haley, MD said he was not trying to convince anyone that mercury
is causing Alzheimer's disease or that thimerosal in vaccines is causing
autism but rather to show that there is an absolute need to understand what
is going on. It's possible to treat a brain with mercury and make it look
just like the brain of someone with Alzheimer's. He published this
information, thinking it was interesting -- and the American Dental
Association attacked him.
The amount of mercury coming off a dental amalgam filling is 43
mcg/cm2/day (with no abrasion or pressure -- the rate is higher with
abrasion or pressure). This rate is toxic. Do not put amalgam fillings in
Thimerosal is more toxic to essential enzyme activity than elemental
mercury even. And it becomes still more toxic if it has been exposed to
light. There are 50 mcg Thimerosal in a vaccine. Using the equation 50 mcg/6
lb baby = x/180 lb adult, the comparable dose for an adult would be 1.5 mg.
Do any of the adults recommending Thimerosal for kids want to line up for
injections of 1.5 mg Hg?
Amy Holmes finished off by urging anyone who has not yet done so to
study the groundbreaking paper "Removal of Hg as a Treatment for Autism,"
which can be found on the ARI Website. It concludes that most cases of
autism are the result of mercury poisoning, either prenatal or early
She said mercury clears within a month of exposure -- it becomes bound
inside the cells and therefore is not easily detected. It won't be in the
urine, blood, or hair, unless the exposure was very recent. (Doctors who
want to test this way are thinking of lead poisoning, which is different.)
To test for mercury, you have to look for its impact on enzymes and other
biochemical processes (urine organic acid tests, fractionated urine
porphyins, immune system tests, specific esoteric tests, hair tests for
essential elements). Also, there are various clinical observations (dilated
pupils, sweaty hands and feet, strabismus, toe-walking, rashes/eczema,
elevated heart rate).
For treatment, she did not recommend chelating "challenge" tests. Her
protocol -- which she has used successfully with her own son -- involved: 1.
Stop the big sources of Hg exposure. Remove amalgam fillings. Stop all
fish/seafood intake. If a child absolutely has to have a vaccine, make sure
it is mercury-free. Watch out for other Thimerosal exposure (eye drops, ear
drops). 2. Clear out the loosely bound Hg. The agent of choice for this is a
drug, DMSA. You have to give it every four hours, around the clock, for
three days, then stop for four days, and then repeat the process -- for one
to six months. Giving it less often is asking for trouble, because the freed
mercury in the child's system will settle back into the tissues before it is
excreted. 3. Clear out the tightly bound Hg (that in the CNS, for example).
Continue with the DMSA and add alpha-lipoic acid. For best results,
give it every three to four hours according to the same schedule as above
and continue from six months to more than two years. Side-effects of this
will include a marked (temporary) increase in undesirabgle behaviors, also
possibly diarrhea, nausea, or fatigue. Other side-effects are rare but you
should be working with a physician who will test for them: decreased blood
count, liver damage, copper retention. The end result is improved language,
self-help skills, and interaction with others. In 13 months, her autistic
son gained 20 months in language and 21 months in cognition.
Finally, an attorney (whose name I didn't get, even though she'd been
sitting beside me) stood up to say in the next 30 days she would be in
district court in Washington demanding that the FDA immediately issue a
Class 1 recall of all vaccines containing Thimerosal. "We've given these
people the data," she said. "What else do they need?" A bit of footage from
one of Congressman Burton's hearings was shown, and I really wish that could
make it onto prime-time TV. It was certainly far more dramatic and
interesting than the political conventions or anything else I can recall.
Rick Rollins stood up to speak a couple times during the conference.
His group has printed up research on vaccines that they want to mail to all
pediatricians in the country as well as legislators in hopes of educating
them. Also, he will be on "60 Minutes" some time between mid-October and
The last presenter of the conference was the famous Andrew Wakefield,
MD. He made numerous telling points that I cannot do justice to. First he
said that the parents had been right when they came to the doctors saying
things like "My normally developing child regressed after getting the MMR"
and "My child has bowel problems and autism and I think they're related."
The doctors were telling them things like, "No, see, your child is autistic
so it's natural for him to have digestive problems." (huh?)
Paying attention to these concerns and looking for the cause is where
one's career starts to go down the tubes. But Dr. Wakefield found, using a
variety of different techniques, that the vaccine strain of the measles
virus was now living in the gut wall of these children, and the same result
was obtained in another study in Tokyo.
The increase in autism is not due to better diagnostic ascertainment.
We know the increase is genuine. The curve in the U.K. parallels the one in
the U.S. But they don't touch. That's because the MMR vaccine was introduced
in the U.K. a few years after its introduction in the U.S.
To make matters much worse, the risk of a vaccine is compounded by
adding cofactors. When a child is exposed to more than one thing at a time,
the result is not 1+1+1=3. There's a synergistic response, as demonstrated
by a study in 1969 that was confirmed in 1974. Since then there has been no
Steve (very tired. I know I still haven't reported a few of the
Saturday presentations. Maybe later if there's interest.)
Take Some Mystery out of Autism
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