Nids

VITAMIN A-***NOTICE CANDIDA, CELIAC DISEASE,
MEASLES,ALLERGIES,CONSTIPATION,MONONUCLEOSIS
...would not this be helpful to supplement for autism
***PROTECTS MUCOUS MEMBRANES IN THE GUT,
PROTECTS DIGESTIVE TRACT, REPAIRES BODY TISSUES (LEAKY GUT), FORMATION
OF
BLOOD CELLS (RED BLOOD CELLS ARE SUSPECT TO BE SCREWED WITH IN AUTISM,
IMMUNOENHANCER-PERHAPS NK FUNCTION?
Actions: growth and repair of body tissues, maintain smooth, soft skin,
protects mucous membranes, combats the effects of air pollutants
(antioxidant), protects digestive tract, kidneys and bladder, builds
strong
bones and teeth, formation of blood cells (hematogenic), maintenance of
good
eyesight, help increase sperm count, immunoenhancer
Traditional uses: abscess, acne, alcoholism, allergies, amblyopia,
angina
pectoris, arteriosclerosis, arthritis, asthma, atherosclerosis, athletes
foot, bedsores, boils (furuncle), bone fracture, bronchiole asthma,
bronchitis, burns, Candidiasis, canker sore, carbuncle, celiac disease,
chicken pox, chronic rhinitis, cirrhosis of the liver, colitis, common
cold,
congestive heart failure, constipation, cystic fibrosis, cystitis,
dandruff,
dermatitis, diabetes mellitus, diarrhea, dry skin, ear infection,
eczema,
emphysema, epilepsy, fatigue, fever, gall stones, gastritis,
gastroenteritis, goiter, gout, hair problems, halitosis, hay fever
(allergic
rhinitis), headache, hemophilia, hemorrhoids, hepatitis, hyperkeratosis
of
the skin, hyperthyroidism, impetigo, impotence, infection, influenza,
jaundice, kidney stones, Kwashiorkor, measles, meningitis, migraine
headaches, mononucleosis, muscular dystrophy, myocardial infarction,
nail
problems, nephritis, osteomalacia, peptic ulcer, pregnancy, premenstrual
symptoms, prostatitis, psoriasis, rheumatic fever, rhinitis, rickets,
scurvy, shingles (herpes zoster), sinusitis, stress, stroke, swollen
glands,
tinnitus, tuberculosis, ulcers (skin), vaginitis, varicose veins, warts,
worms, xerophthalmia
[fwd from Interven list]
--
via Neil S. Clark

Hi all,
I know this is an age old question, but is there anything (other than the
traditional redirecting/behavioral approach) that will decrease/stop the
stimming? I detest everything about autism in general, but the stimming is
my pet peave. My son, although he is very well behaved and I should count
my blessings, stims SO MUCH- in the form of flapping, finger twiddling,
verbal stimming, squealing, etc. We do the GF/CF diet, Goldberg therapy,
ABA, supplements, secretin. I have always felt a lot of his stims look so
involuntary (Tourette like) sometimes. You would think there would be some
medicine to inhibit this. Obviously not, or we would all know about it. Is
there possibly something I'm overlooking??? I know I am not alone in my
hatred of the stims. I just thought I needed to vent, and also check (for
the billionth time) to see if there is something out there I am not aware of
to help in this department.
Trina

The info from the site Neil sent says MSM helps if you have insufficient
PST(phenol sulfur-transferase) Below is info from another website
Sulfur-Transferase Deficiency
Preliminary studies by Rosemary Waring, of the University of Birmingham, UK,
suggests an enzyme deficiency in autistic children [Shattock has reported
similar findings in children with ADD and ADHD.] This abnormality effects the
sulfur-transferase system. With insufficient phenol sulfer-transferase (PST),
individuals have an extremely low capacity to oxidize sulfur compounds. Children
with this enzyme deficiency are unable to fully metabolize certain foods and
chemicals that contain phenols and amines. PST is necessary to break down
hormones, some food components and toxic chemicals that we encounter daily. If
the enzyme is deficient, the body cannot detoxify the system--that is, it will
be unable to render these substances harmless.
If this happens, harmful substances that should be metabolized (broken down)
would build up to abnormal levels. These substances include serotonin, dopamine
and noradrenaline. The children most likely to show this deficiency (based on
her small sample size) showed normal development for the first 18 months to two
years of life, and also show family histories of asthma, skin problems and
migraine, as well as sensitivity to foods (especially wheat, milk and
salicylates.) Many metabolic processes can be disturbed by phenolic compounds
and cause many physical problems that may not have been previously thought
connected to autism (excessive thirst, night sweating, facial flushing, reddened
ears etc.)

Margie,
I usually discuss my younger son because he is the most severely affected.
My seventeen yr old son started getting sick all the time in Jr High. We
did allergy shots on him for about a year. Prior to that he had been an
A-B student, after that his grades were terrible. After doing the shots
he was not getting sick alot and missing school. I assumed that he was
doing o.k. Over the last few years I kept thinking that his grades were
going to improve. When he took a class in summer school his grade would
be A-B, then he would be in regular school and his grades were awful
again. If I didn't know anything about this illness I would probably
think that he is just not trying. He has had some of the sores in his
mouth, which I hadn't though about. He also had insomnia, short term
memory problems,no behavior problems. A few months ago we started treating
him. We had also been fighting a scalp problem for a long time. Prior to
seeing Dr. Goldberg a local doctor did a biopsy and we found out that it was
psoriasis. Since starting him on Valtrex and Nizoral, he has lately been
telling me that he is sleeping better, feels more alert. His psoriasis
is way better and I've also noticed that his acne on his chin is clearing.
Cheryl

From all the things that I have read, it sounds like there are some that
actually have these smoldering viruses and others that have elevated titres
because their immune systems are so overactive. They may have had a
previous virus which was suppressed, but their immune system is still acting
like it's fighting a virus. Or the virus or other infection caused their
immune system to start producing autoantibodies. With my younger son, I
believe he has smouldering viruses and autoimmunity besides the thyroid.
If I remember correctly, Valtrex is supposed to work against HHV6, maybe
Teresa can tell us. Kutapressin is supposed to be effective against all the
herpes viruses. I did find that my son could not tolerate some of the other
anti-virals, but could tolerate Valtrex with the dye washed off.
Cheryl

Mark,
I don't think that any doctor who is familiar with the type of illness(NIDS)
our children have, would reccommend that type of procedure. I could be wrong,
but it seems to me that a reason for such a major test would only be necessary
if a child is very ill with a viral encephalitis, which is different.
Cheryl

I wuold like to know if anyone who treated the HHV6 elevated titres with
acyclovir retested after a while and saw a decrease in the titres.
My daughter's titres were 1:160. After 8 months of high dose acyclovir, her
titres were restested at 1:640.
Does anyone have a publication that shows acyclovir is effective against
HHV6? The manufacturer of the drug does not mention that this medication is
used for HHV6. My daughter does not have antibodies to varicella or HSV 1 &
2. Perhaps some of the positive results seen are for treating those viruses
and not the HHV6.
Jo Silva

Liz
Please hang in there. Your living conditions seem very difficult and your
child's needs are extensive. I can only imagine how much you are struggling.
I don''t know how to help you with referals, etc., so please simply accept my
voice of prayers and empathy toward your pain and frustration. You are not
alone. Becky

I wouldn't do it; spinal taps carry considerable risk and I would be
sceptical of exactly how many viruses this test could NOT identify. The
medications are not dangerous, so to me it makes more sense to run a trial
through the medications; if one is targeting the correct virus, YOU WILL
KNOW IT.
Kate

The allergy trained Doc who poo pooed everything I said about triggers and
ADHD had a little girl about 6 years ago. She was normal except for ear
infections and asthma until about 18 months and then started to regress big
time and it became very obvious that there was a big problem. Now I would
like to say that he became a convert and the kid is doing great unfortunately
our entire medical staff tried to point out to him that something was wrong
and forget it... His wife now uses the A word but he doesn't and it's a big
secret anyway. I've sent the Mom all the info. from Dr. G and pray that Dad's
denial and ego won't continue to stand in the way of this child getting the
help that she needs.

I can site you references in the leading Audiological journals that relate
milk and wheat to ear infections, and they are not new articles. I used them
with an allergy trained family practice Doc who use to tell my patients that
their children misbehaved because of poor parenting not allergies. I took my
child to Dr. Rapp and have used her principles with great results BUT I have
always thought that the phenomenon was more than the allergen -- antibody
reaction that you are dealing with when you are dealing with allergies. More
and more health care practitioners are allowing for the possibility that
spectrum disorders do respond to food and other controls because research is
being done and parents are proving it to them. Remember, there was a time
when childhood schizophrenia was blamed on poor mothering and we have long
since thrown that theory out. People will come around eventually as they see
the good results AND the immune theory is studied, the studies published,
duplicated republished etc. KathyR

I also find it very very interesting. I have to figure out where I put my
NIDS conference stuff, but I know coxsackie was one of the viral culprits the
NIDS doctors are looking into. David only had coxsackie once;it is the
herpes that seems to keep recurring. the other thing I find to be
fascinating is that following each Secretin infusion, David has had either
strep, or herpes, or some other viral thing -- almost as if the virus has
been sitting in his immune system and something about the Secretin "pushes"
it out.
Re: the herpes thing and zovirax, tonight, for the second night in a row,
David fell asleep by himself without any Benadryl or Melatonin. Zovirax is
the only thing I have added recently. I am trying to imagine why the Zovirax
is having this effect. Teresa Binstock -- are you out there? Can you
explain this? Anybody? Margie

Our pediatric neurologist wants to perform this test on our 6 year old son.
We understand that it potentially can reveal actual viral activity in the
CNS (as compared to antibody assays, etc.)
On the one hand, if it helps us home in on what virus(es) are the culprits,
and use more specifically targeted anti-viral therapies, that would
obviously be of value.
If it shows no evidence of viral activity, that too would be useful to know.
But it involves a spinal tap on a large, robust 6 year old w/ autism...
Any thoughts on this much appreciated...
Mark

I can't answer this except with an assumption that it would, since the
zovirax is
supposed to fight off the virus. It seems to me it would lower the outcome.
But
maybe somebody more knowledgeable could answer this.
Cindy
cindy.p@...

In a message dated 99-09-06 19:56:55 EDT, you write:
<<
I can't answer this except with an assumption that it would, since the
zovirax is
supposed to fight off the virus. It seems to me it would lower the outcome.
But
maybe somebody more knowledgeable could answer this.
Margie: It sounds like this was IgM? My son has very high IgG (1:320, ref
is 1:10 and also high on Singh's assay). We are contemplating trying zovirax
with the hope and theory that is may lower this titer (with the attentand
other good results). Please let us know if you get the titers redone and they
are lowered by Zovirax.
Maura

Dr Goldberg doesn't believe we need to go to extremes on diet. The main
things that we avoid are milk and dairy, chocolate, whole wheat, and
mostly red things, although I try to avoid alot of food additives.
The MSM needs to be started low and slowly increased. A radio show I used
to listen to suggested starting at a high dose and I tried this on myself.
Big mistake, I felt terrible. I was on the couch for two days with the
biggest,longest headache I had ever had. I should mention that the MSM is
not something that doctor Goldberg uses or has recommended.
Cheryl

In a message dated 9/6/99 12:28:19 PM Eastern Daylight Time,
cindy.p@... writes:
<< I tried giving him MSM, but it was not a pretty sight. Started at 750mg
twice a day. Since then, I have read you should start VERY slowly, (about
200mg to start) and work up slowly after about 3 weeks.
what is MSM? What specifically are you using it for? Both of my children
perspire heavily at night and David is particularly sweaty most of the time.
I have mentioned this to every doctor but never received any kind of response
indicating understanding or recognition of the problem. Thanks. Margie

When my son was five we started working with an Environmental doctor like
doctor Rapp. My son had alot of food and chemical sensitivities and yeast.
Our Asst. Superintendant fortunately had a very open mind. He watched alot
of tapes, read info and even spent almost an hour on the phone with the
Spec. Ed at Waterloo School district in Canada. The schools up there have
become very involved in recognizing how childrens behavior and ability to
learn is effected by immune problems. We have had environmental accomidations
at school ever since. By second grade my son was falling apart and
unfortunately this was right when our school had hired their own psychologist.
He had a real hard time buying any of this. He wanted me to send my son up
north for an evaluation, which I later found out would have been an overnight
psychiatric evaluation. It was after I had let him try to deal with the
behavior his way. One time I got a call asking me if my son had showed up at
home because they couldn't find him. I found him halfway home after crossing
a busy street. Another time he had managed to get my son to where he was so out
of it he was trying to bang his head against a stucco wall. Another time my son
was so out of control, when I went to pick him up the psychologist was the only
one in the classroom, they had cleared all the other kids out. My son was under
the desk actually growling, his shoes were off because he had thrown them, his
crayons were on the floor all broken. He would make my son even worse by the
approach he was trying to use. Last year when I was talking about the
connection between these kids and CFIDS, he told me that he had been diagnosed
with chronic fatigue ten years ago. The most ironic thing is that last year
he had to call me back because a woman who was temporarily sharing their offices
was wearing a perfume that was making his brain fog up, head hurt and sinuses
start filling up. He couldn't understand how my sons behavior was affected
before but it seems he knows that his brain is affected. How ironic.
Cheryl

Cheryl,
Our son, Kenny, is also phenol sensitive. Although we are desensitizing him
right now with sublingual drops from Dr. Layton, it is still a BIG problem
finding foods he doesn't react to.
He is GFCF, and also on the Feingold diet.
I tried giving him MSM, but it was not a pretty sight. Started at 750mg
twice a day. Since then, I have read you should start VERY slowly, (about
200mg to start) and work up slowly after about 3 weeks.
My questions:
1) Did you also find that you needed to start your son on a very low amount
of MSM when you started him on the supplement?
2) What foods do you feed your child? Everybody seems to think I am nuts,
but we try to keep him completely phenol-free due to him becoming very
spacey. The problem is, once you remove the phenols, there's not much left.
Are there some foods that are better than others in your experience?
Thanks!
Cindy
cindy.p@...

Yes, there's so many questions - I've had more than one specialist (allergy,
pediatrics, etc.) stare at me like I'm a complete idiot when I tell them
that 1) milk causes the ear infections, and 2) my son's PDD behaviors emerge
in full force when he's off the careful diet and supplements. Sometimes I
don't believe it myself. At least when he was small I knew the infections
and milk were messing something up, because he'd have stools up his back and
down his legs - a real visible sign. Now his stools seem to have settled
down, but he will get very aggressive or space out or start making noises
for no reason when he gets too much dairy in his system. Then the sinuses
will flare up, or fluid will come out of one of his ears. All this and now
Kindergarten is starting this week - I've had 3 professionals suggest
strongly that he needs an IEP, an aide, assisted P.E., etc. Oh, and by the
way, his IQ is over 135, but his self help and socialization skills are that
of a 2 or 3 year old. How much can I blame on milk (or whatever else I'll
hear from the neuro-immunologist?) I've always believed he was sick, not
psychologically messed up - my other kids never got all the infections he
did. Then I hear that gifted kids usually have emotional problems. Is that
part of an immune system failure, or even true? If he is so intelligent,
why would he need an aide? And why do I have to fight the school system to
get one? Do I home school, or tutor him until his brain recovers from
whatever this immune thing is? I don't have the ability to home school him
myself, and how will he ever learn "normal" socialization if I keep him
safely tucked away at home? And how many therapists do I really need for
him? When he first was diagnosed at 2, I did therapy (OT, Speech/Lang,
Pragmatics) 7 days a week - taught him to sign enough to communicate, and
then after all that and his health improved we started treating him like my
other kids. But he isn't like them. I'm just praying that Dr. G can do
something - the diet and supplement regimen I devised for him was really a
shot in the dark 3 years ago, and had a positive impact - but it was very
hard to stick to, especially with 3 other kids in the house - and not one
doctor agreeing that maybe I was on the right track except for maybe Doris
Rapp (via books). He's had the Meridian Valley allergy testing 2 times
(expensive!) and he's allergic to about 75% of the foods tested. But the
conventional allergist/immunologist he last saw did skin testing and
declared he wasn't even sensitive to house dust, much less any foods. So
how nuts does the parent feel then? Or actually, helpless and frustrated.
Then on good days when my neighbors or family claim there is nothing wrong
with him, he just needs a more strict environment. I've gotten to the point
of just staying away from other people because they don't understand (oh no,
I'm getting PDD too!!!)

I think one of Dr. Goldberg's main concerns is the transmission of
retroviruses in the IVIG infusion that don't show up until later; search his
web site for more info www.neuroimmunedr.com
Kate

Carolyn,
My 10 year old has PDD-NOS also. The biggest worry in our lives during the
first two years of her life (somehow regressed speech takes a back-seat to
wheezing!) besides her congenital esotropia was her asthma, then the ear
infections, then the tubes (twice) and adenoids and forever the rhinitis. She
has been on an avoidance diet for 6 years, and we do allergen control So we
have not had an asthma problem in years, BUT every spring she falls apart and
doesn't get herself back together until after the first frost. Ragweed season
(right now) is the worst. We will be seeing Dr. G in the future. Can you
imagine the looks that you get when you try to explain to people that your
child's misbehavior is do to the change in the seasons? (WOW there's a new
excuse!) I long ago stopped caring about people's opinion anyway... KathyR

In a message dated 09/05/1999 4:53:36 PM Eastern Daylight Time,
jlois@... writes:
<< Hi! what is zovirax used for? thank you, lois (JJsmom)
It is typically a cream prescribed for cold sores (herpes), but also can be
taken internally. David is taking the liquid zovirax, at a very low level (1
tsp per day). something is definitely happening...... Are you familiar with
the HHV6 research? Margie

I thought this was interesting - especially considering the funding source.
Especially this part:
"The results also may explain the finding by other researchers that live,
weakened measles virus vaccines also have been found in laboratory studies to
cause similar effects in the CMI. Karp emphasizes, however, that the current
measles vaccine used in the United States is both safe and effective."
(of course, the last sentence is a must considering the funding source).
Maura
MEASLES VIRUS: ONE LESS MYSTERY
July 11, 1996
Media Contact: Marc Kusintz
Phone: (410) 955-8665
E-mail: mkusinitz@...
Johns Hopkins researchers have discovered an important way by which the
measles virus weakens the immune system, leaving infected individuals in
developing countries more vulnerable to deadly infections. The finding helps
to explain why measles is a major cause of death in those areas, and also may
help to explain how the AIDS virus weakens the immune system.
Working with laboratory cell cultures, the Hopkins researchers showed that
the measles virus blocks the release of an important chemical from monocytes,
a type of white blood cell. The molecule, called Interleukin-12, or IL-12, is
critical for the activation of a part of the immune system called
cell-mediated immunity (CMI). CMI is an important defense mechanism against a
variety of viruses, bacteria, as well as protozoa, one type of which causes
malaria. In the absence of IL-12 production by monocytes, CMI is greatly
weakened. The study was funded in part by the National Institutes of Health.
"Our study may explain why measles is so dangerous in places where the
disease is widespread and medical care is limited," says Christopher Karp,
M.D., assistant professor of medicine and lead author of a report on the
findings, published in the July 12 issue of Science. "In the developing
world, up to two million children die each year from diseases like pneumonia
and diarrhea after they get measles."
The results also may explain the finding by other researchers that live,
weakened measles virus vaccines also have been found in laboratory studies to
cause similar effects in the CMI. Karp emphasizes, however, that the current
measles vaccine used in the United States is both safe and effective.
Karp's team showed that the measles virus needn't get inside monocytes to
suppress immunity; the virus only had to bind to certain molecules on the
cell's surface. The virus forms a bridge between these molecules, called CD46
proteins. When these proteins become linked, the cell stops releasing IL-12.
The Hopkins team also found that a group of immune system substances called
complement proteins turns off IL12 release from monocytes. Complement
proteins can apparently also link CD46 molecules together, preventing
monocytes from releasing IL-12, according to Karp. The ability of complement
to shut down production of IL-12 by measles also may be part of the process
by which the AIDS virus suppresses the immune system, he adds.
In order to see how closely his laboratory results reflect what's happening
in children, Karp next plans to study the levels of IL-12 in the blood of
children with measles in developing countries.
The type of measles virus studied by the Hopkins team is the common,
childhood, rubeola measles.
Other authors of the study include Joseph M. Ahearn, M.D., Ph.D., Peter J.
Cuomo, B.A., and Diane Griffin, M.D., Ph.D. (Johns Hopkins); Maria Wysocka,
Ph.D., and Giorgio Trinchieri, M.D. (Wistar Institute of Anatomy and Biology,
Philadelphia); Larry M. Wahl, Ph.D. (National Institute of Dental Research,
NIH); and Barbara Sherry, Ph.D. (Picower Institute for Medical Research,
Manhasset, N.Y.).
Additional funding for the study was provided by the Peggy Meyerhoff
Pearlstone Foundation and the World Health Organization.
--JHMI--

Kutapressin - I though it was just used for the hyperactive,
climber, runner type of child. Sometimes used in a patch-form
between the shoulder blades for slower release through day.
In searching for Kutapressin in Medline however refers link with HHV-6
--
Neil.

In a message dated 99-09-05 12:52:50 EDT, you write:
<< Is HHV6 testing something that any lab can perform or does it have to be a
speciality lab??Is it a blood test?
Thanks,
Mary
Mary,
We had this done through our local lab (Smith Kline). It is a blood test.
Singh also tests for HHV6 using a different method. If your local lab
doesn't test for it inhouse, they can send it out.
Maura

In a message dated 99-09-05 21:16:20 EDT, you write:
<< My understanding is that the only risk is possibly an allergy to the
medication,
which is tested for prior to being prescribed. My son hasn't had any
negative
effects that I am aware of. It is not a fast acting medication. He was
taking
it for around six weeks before we started seeing effects and since then it
has
been a steady improvement. It is not his only treatment, he is on the other
medications, but it was definitely a big step in his progress. I know that
after he had been on Valtrex and Nizoral for about four months, there were
some
lab tests run by a different doctor which showed that some immune
abnormalities
had improved.
Cheryl
Thanks Cheryl. What immune abnormalities improved with the Valtrex and
Nizoral? Were these abnormalitites the reason that your son was given Valtrex
and Nizoral or was it targetted at HHV6? How long does the Dr think that
your son will have to be on Kutapressin - or does it depend on lab results?
I always wonder if the infection will come back once the child goes off of
the anti-viral.
Thanks again for sharing your experience. I know it isn't a great reward to
just be hit with even more questions.
Maura

Hello everyone,
If I may I would like to take a moment to impose upon you and your list
members. I am one of the PA State Representatives of the Autism Resource
Konnection, ARK. On Saturday, October 2, 1999 many of you will be attending
the DAN Confrence in Cherry Hill, NJ. I would like to extend an invitation
to all attending.
On the evening of Saturday, October 2, 1999 there will be a fundraising
dinner and Chinese Auction. The funds raised that evening will be two fold.
First will be to provide buses for families wishing to attend the
Hear~Their~Silence Rally in Washington, DC on April 8, 2000 <A
HREF="http://www.autism.com/ari/contents.html#toc"
HREF="http://www.geocities.com/Heartland/Lake/8577/ARK.html"
Konnection</A
The dinner will take place in Philadelphia at St William's Hall. This is
approximatly 20 minutes from the Cherry Hill Hotel. The evening will begin
at 7:00pm and end at Midnight. It is a casual attire evening. A buffet
dinner, beer, mixers, DJ and prizes will be on the agenda. Please if you
want additional alcohol you must supply it. No one under 21 will be
permitted, IT IS THE LAW. Tickets are $25.00 a person.
Our tables will seat 10 so why not get a group together. Please come and
enjoy a night of relaxation, enjoyable conversation, and simple fun. Autism
Awareness is near and dear to all of our hearts. We hope that you will come
and help make this a huge success. Make sure you bring your wallets!
If you would like to attend please contact Lisa Smith at
Lisa62864@... or Stephanie DiGuglielmo at a1a2ana3@.... To insure a
table please purchase your tickets in advance. I look forward to meeting all
of you in person.
Thank you for letting me impose.
Stephanie DiGuglielmo
Lisa Smith
Autism Resource Konnection

<My son has high HHV6 titers. I am looking into therapy for this for him.
<Can you tell me a little more about your expericence with Kutapressin? Side
<effects? You said it has been helpful. Can you describe this a bit? My son
<has been regressing and we suspect it is related to reactivation of HHV6.
<Has the KU brought your child's titers down at all? Any details you are
<willing to provide would be most appreciated!
<Thanks,
<Maura (SMPants@...)
My understanding is that the only risk is possibly an allergy to the medication,
which is tested for prior to being prescribed. My son hasn't had any negative
effects that I am aware of. It is not a fast acting medication. He was taking
it for around six weeks before we started seeing effects and since then it has
been a steady improvement. It is not his only treatment, he is on the other
medications, but it was definitely a big step in his progress. I know that
after he had been on Valtrex and Nizoral for about four months, there were some
lab tests run by a different doctor which showed that some immune abnormalities
had improved.
Cheryl

I am familiar with Dr. Gupta's work; my three kids are being treated by Dr.
Goldberg---i think I can say with confidence that Dr. Goldberg would advise
you strongly NOT to do the IVIG infusion---
Kate

could you please tell me why and send me to the place where I can read some
of the arguements he has against this... My son is scheduled to start IVIG
because of a weaken immune system...

In a message dated 09/04/1999 11:25:48 PM Eastern Daylight Time,
1raptor@... writes:
<< the NIDS hypothosis (13)&(14) are both about seizures,
epilepsy from temporal lobe herpes simplex encephalitis. There are some
adults who have seizures, it doesn't seem to happen as much as the other
dysfunction.
Where can I read more about this? Or can you explain it more? Are you sayig
that the herpes virus can cause seizure activity when the virus is located in
the temporal lobe? whose research is this?

I know that Dr Gupta is very well known, but I don't have any personal
experience. He was mentioned in one of Dr. Goldbergs autism articles
which sounded like he would be working with Dr. Klimas on the immune
profiles. I don't know if that has changed or not, maybe someone else
knows. On the website that Neil listed, some of his work with IVIG and
autism is listed. It does mention high dose IVIG, the information I had
mentioned about concerns with immune stimulation, did mention that a
high dose could work differently and over-ride that problem.
Re: Carolyn seeing both doctors. I don't know if they run the same types
of tests or if any treatment would be started right away with Dr. Gupta.
But if you start some type of treatment prior to seeing Dr. Goldberg
it could affect the accuracy of blood tests. Hope that things go well
for you.
Cheryl

No-my son had no overwhelming medical problem-he was autistic. Goldberg
simply thought it would be useful to boost his immune system, and it seemed
to work. sorry i cant be more help-id suggest talking to Goldberg

Dear MAT Members,
Several of you have approached me, or expressed an interest in
setting up "MAT" Chapters in various locations across the country. As a
growing organization, we need all the support we can get! The stronger
we get, the more we can help our children. As far as setting up
chapters, you have our full support.
We have our annual major meeting in NY on Sept. 18, 1999,
where several important issues will be discussed and several important
decisions will be made. One of those, will be the opening of several
board seats. Elections will be held in early 2000, and the new board
will have the ability to take MAT/NIDS as far as our imaginations will
travel! We will also discuss how we can simplify the financial/legal
concerns you may have, in order to open new chapters of MAT. These will
be discussed and resolved with the aide of legal and financial experts.
If you are seriously interested and have any specific questions,
please email me as soon as possible so I can incorporate them into our
discussions and put the issue of opening up chapters on our agenda.
Thank you for your interest,
Pat Weaver
President MAT:Medicine for Autism Today

Is HHV6 testing something that any lab can perform or does it have to be a
speciality lab??Is it a blood test?
Thanks,
Mary
http://www.care-mail.com - Free E-mail/e-card accounts that help save Wildlife!

Has anyone worked with Dr. S. Gupta, Chief of Basic and Clinical Immunology
at University of California Irvine? We are seeing him in a couple of weeks.
My son's best therapist (in Dallas) gave me his name - she has done amazing
things in the autism field, setting up therapies in Italy, lots of progress
with her autistic patients. Anyway, I am now living about 2 hours south of
Dr. Goldberg, and have an appointment with him as well in October for my 5
year old PDD-NOS son, hoping for good things from one or the other. We have
been subject to so many conventional doctors who do not believe that his
allergies could change his behavior as well as the alternative doctors who
charged us so much money for questionable services... we have done the Great
Smokies stool thing, and the Meridian Valley blood test for allergies as
well as RAST and ELISA and skin testing. My son has had 3 sets of ear
tubes, still gets infections; tonsils and adenoids out; chronic sinusitis -
and his "autistic" behaviors emerge in full force just before and during
illnesses. He did have testing of his immune system (testing for Celiac)
that had one panel (IgG) come back out of range. But the doctor said it was
not significant, and sent us on our way. We recently saw a Dr. Kyle
Pontius, psychologist, who evaluated him again, and did diagnose the PDD-NOS
but said his IQ was between 135-140! He is capable of doing anything he
wants to, but when he feels bad (especially if he eats dairy) he reverts to
behaviors that we were dealing with when he was 2 or 3. Dr. Gupta is
supposed to be doing the same type of treatment (neuro-immunology) as Dr.
Goldberg - and as I asked above, anyone on this list have experience with
him? Thanks!

What were you treating with the Kutapressin?
Did you son have elevated titres of HHV6?
Other significantly elevated titres?
Teresa

dose was around 6 cc's, 3 times per week. We recently went to 2
times/week with no changes and if all continues well, Goldberg thinks
we'll probably go to 1 time in a couple months.

My son has taken Kutapressin for about 1 1/2 years under Goldberg's
direction. We feel it was the single biggest medical factor which led to my
son's recovery from autism. After the first 2 months, the dose was around 6
cc's, 3 times per week. We recently went to 2 times/week with no changes and
if all continues well, Goldberg thinks we'll probably go to 1 time in a
couple months.

i forgot to mention-my son fianlly learned how at about 5 1/4 yrs old. took
him 6-8 mos before he got it

We taught that (years ago)--I think this is what worked best: teach legs
only (arms will follow as he gets the sensation). One Tutor physically
manipulates swing to go forwarard while second tutor extends your son's legs
(SD=legs out). Then as 1st tutor brings the swing back to resting (SD=legs
in) , 2nd tutor folds child's legs in. Basically you are swinging in slow
motion, physically prompting him through leg motions. We sometimes would
stay with something monotonous like this for WEEKS then boom, he'd get it,
and his skills would shoot ahead on their own. When we had goals like this,
I would sometimes schedule tutors to overlap 1/2 hour to work on things
requiring two people, if i were not available at that time. Good luck
Kate

- http://www.jorsm.com/~binstock/lks-hsv.htm
That HSV can contribute to some cases of epilepsy and/or language
loss does not mean that HSV accounts for all such cases, not even if
the parent has had frequent cold sores. Nonetheless, the med history
of frequent parental cold sores suggests that HSV ought be considered
as an etiologically significant possibility in that family's autism
spectrum or epileptic child. Teresa
Thanks for that, Tesesa
I am regularly told, especially when young,
I apparently stared through the teacher
(they called it asleep in class) - or something else
Then when I asked for a sleep EEG for my Autistic son
(WHO regressed when young & lost language etc)
the ped said waste of time, just try Valproate -
but it made no difference to either.

In a message dated 99-09-05 00:35:51 EDT, you write:
<< HHV-6 is one of the viruses that we check for. Alot of the kids and adults
show reactivation. I know recently they have been talking about an A and B
strain. My younger son is on Kutapressin and it has really been a major help
for him. Ampligen is still in trials as far as I know, on a cost recovery
basis, its very expensive. The hope is that soon we will have the immune
modulators available. Trials have already started with the adults.
Cheryl
Cheryl:
My son has high HHV6 titers. I am looking into therapy for this for him.
Can you tell me a little more about your expericence with Kutapressin? Side
effects? You said it has been helpful. Can you describe this a bit? My son
has been regressing and we suspect it is related to reactivation of HHV6.
Has the KU brought your child's titers down at all? Any details you are
willing to provide would be most appreciated!
Thanks,
Maura (SMPants@...)

HHV-6 is one of the viruses that we check for. Alot of the kids and adults
show reactivation. I know recently they have been talking about an A and B
strain. My younger son is on Kutapressin and it has really been a major help
for him. Ampligen is still in trials as far as I know, on a cost recovery
basis, its very expensive. The hope is that soon we will have the immune
modulators available. Trials have already started with the adults.
Cheryl

INFECTS almost all chidren by 2 & lasts lifelong. Has been associated
with some neurological disorders, including encephalitis and seizures.
Perhaps plays a role in CFIDS.
The recently discovered human herpesvirus-6 (HHV-6) is being associated
with an increasing number of conditions in which there is evidence of
immunologic dysfunction. A number of widely available antiviral agents
have shown little or no activity against the virus. We found that
Kutapressin (KU), a drug that has been available to practicing
physicians for over 50 years, has potent, previously unexpected
antiviral effects. Cells known to allow replication of HHV-6 were
infected with the virus, under various conditions. Either pretreatment
of the cells prior to infection or treatment shortly after infection,
inhibited viral replication by &gt; 90%. Indirect evidence suggests that
KU may inhibit viral attachment to cellular receptors, and inhibit
intracellular maturation of the virus. Given these in vitro findings,
and the low frequency of toxicity reported with the use of KU, clinical
trials of this drug in patients with evidence of reactivated HHV-6
infection would seem to be warranted. PMID: 7893985, UI: 95201212
Ampligen inhibits human herpesvirus-6 in vitro.- the drug was then
later tested on people
with CFIDS/CFS, and also on people with AIDS-related fatigue. The
results have been very promising.
Dosages can be found in the studies. The company that makes the drug is
called HemispheRx. The second most
effective drug studied so far in these cases is an old drug once used
commonly to treat cystic acne,
called Kutapressin. It is a peptide based porcine liver derivative that
must be injected itramuscularly.
It has broad anti-infalmmatory actions, but the mechanism of action is
unknown. There is some speculation
that HHV-6 is related to or a variant of the African Swine Fever Virus,
and that there is some
immunomodulatory property to Kutapressin that is, as yet, unknown.
Studies using Kutapressin to treat
CFIDS/CFS and to treat AIDS-related symptoms have also been promising.
In those studies, Kutapressin was
given at fairly high doses: 2cc intramuscularly, daily for one to three
months, then biweekly for the
duration of the study. (See various reports by Neenya Ostrom.)
Currently, in people with AIDS on hormone
replacement therapy, Kutapressin is often used as part of a regimen to
control acne. There are reports of
immunological benefits as well. In these cases, Kutapressin is taken in
2cc intramuscular injections every
10-14 days, concurrent with their hormone injections. Kutapressin is
manufactured by SchwarzPharma, and is
available by prescription in the U.S.
--
via Neil S. Clark

Trina,
Our son is also 6, and is just getting these skills. Believe it or not, the
occupational therapist actually had us focus on his ARMS, not his legs.
If you really stop and think about what you are doing with your body, it
actually involves more of the upper body than the lower, although we all
think about it as coming mostly from the legs. But the upper body has to
lean back and move forward as well.
The OT had Kenny on one of those big wooden therapy swings, and really
emphasized the pushing and pulling with the arms.
At home, I would swing beside him, and when the swing went back and up, I'd
tell him to "pump".
It took a long time (not quite as long as the year it took holding onto his
feet on his bicycle pedals!) but he finally has it.
Another thing you can do to encourage him is to stand in front, hold your
hands up, and say "get my hands". I also had him reach his legs for the
leaves on the tree.
Good luck! And be patient. It's really a very difficult skill to learn.
Cindy
cindy.p@...

Neil,
Med literature describes cases wherein a pathogen is spread from a
parent or other relative to someone close in the family. This raises
a statistical possibility, ie, if a person has cold sores much of the
time, then he or she would be more likely to shed live virus from
time to time. Another round of statistical analysis would indicate
that only in some children acquiring their infection that way would
the infectious agent (HSV) find its way into the CNS. The result of
such an HSV migration could be epilepsy and/or language loss -- and
these effects of HSV are already documented in med lit. I'm
fascinated by the fact that HSV med-lit describes processes that are
the virtual or actual equivalent of Landau-Kleffner syndrome. As
you've seen in two replies, acyclovir -- or its Valtrex variant -- is
effective against HSV and some kids improve noticeably on acyclovir.
I've a web site offering some citations about HSV, seizures, and
language -- derived from some prior postings into the autism list:
http://www.jorsm.com/~binstock/lks-hsv.htm
That HSV can contribute to some cases of epilepsy and/or language
loss does not mean that HSV accounts for all such cases, not even if
the parent has had frequent cold sores. Nonetheless, the med history
of frequent parental cold sores suggests that HSV ought be considered
as an etiologically significant possibility in that family's autism
spectrum or epileptic child.
Teresa

Thanks. It doesn't seem that his opinions are that different. He did
discuss alot of the abnormalities our children have. He seems to have the
opinion consistant with NIDS re cytokines, etc. He is just using a
different approach.
Cheryl

My mother gets cold sores and I've had them at different times since I
was a child. My boys(NIDS) haven't had a problem with them. The
references on the NIDS hypothosis (13)&(14) are both about seizures,
epilepsy from temporal lobe herpes simplex encephalitis. There are some
adults who have seizures, it doesn't seem to happen as much as the other
dysfunction.
Cheryl

I don't really know any answers to the questions you raise, but I have some
interesting information to share. After attending the NIDS conference in
June I have been thinking a lot about what was said re: viruses. One of the
viruses mentioned several times was herpes and David, who is 6, has had more
herpes outbreaks in 6 years than anyone I know. Recently (since doing
secretin, perhaps) he has had numerous sores in his mouth. I called the
doctor and convinced her that we needed to try zovirax. Yesterday was the
first day. today he was more verbal, more attentive, more normal than I
think I have ever seen him. Is this just my imagination? Has anyone else
had a similar experience with zovirax? and could the change take place this
quickly? the other thing I am wondering is how long people have had their
kids on zovirax. the Rx says for David to take it for 4 days and then stop,
but I certainly don't want to stop it if it is really helping him. thanks
for any insight into this interesting issue. margie

Hi all,
My son is 6 and has the gross motor skills of a three year old when it comes
to playground skills. We have been trying to get him to pump his legs on
the swing forever it seems, to no avail. First we focused on his legs and
having him extend out, then back in, ..... Now we are trying to focus on
the arms and have him "pull back" ..... He still just doesn't get it.
What SD's are best? Any other suggestions?
Trina

If a parent suffers from frequent cold-sores is it likely
that the special child may suffer also from Herpes simplex also?
Is there an age/time/stress? that triggers its appearance?
Do epileptic children not have Herpes simplex?
Answers may or may not be interesting.
Neil.

http://www.gnd.org/Autisme_Research_Center/autisme_research_center.html

can you tell me what other immune panels I should do to see if he does have
this overactive system? Carol

On Aug 31, 1999, Maura had asked:
"Does having high IL-12 and low IFN-G help to pinpoint where the
problem may lie at all?"
Here is an answer based upon HHV6:
Consider: "HHV-6 infection induced the expression and the production
of IL-10 and IL-12 in monocytes..." (1).
IL-10 is described as the major downregulator of IFNg (2).
HHV6 infection of monocytes decreases IL-2 (3), another cytokine that
induces IFNg (cites provided off-list).
Perhaps we have differential regulation of IL-12 (up) and IFNg (down)
by HHV6 infection of monocytes and macrophages. There are complex
feedback relationships involving these substances, nonetheless, the
primary relationships cited hereinabove at least provide a
literature-based model for understanding Jonty's low IFNg and
elevated IL12. Interestingly, HHV6 is the link that ties these all
together. Coincidence?
This "coincidence" -- along with Jonty's elevated IL12 and low IFNg
-- provides another justification for documenting his HHV6 load
within monocytes.
Teresa
1. Clin Exp Immunol 1997 Sep;109(3):421-5
Interferon-gamma (IFN-gamma) regulates production of IL-10 and IL-12
in human herpesvirus-6 (HHV-6)-infected monocyte/macrophage lineage.
Li C, Goodrich JM, Yang X
Children's Hospital, Chongqing University of Medical Sciences,
People's Republic of China.
To determine whether HHV-6 infection induces expression and
production of IL-10 and IL-12 in monocytes/macrophages, and to
explore the influence of IFN-gamma on cytokine production in
HHV-6-infected cells, expression and production of IL-10 and IL-12
were evaluated through reverse transcription-polymerase chain
reaction (RT-PCR) and sandwich ELISA. HHV-6 infection induced the
expression and the production of IL-10 and IL-12 in monocytes and
THP-1 cells. Kinetic study showed that the expression of IL-12 mRNA
decreased with accumulation of
IL-10 mRNA. Expression and production of IL-12 were markedly
increased when anti-human IL-10 MoAbs were added to the cultures,
implying that endogenous IL-10 induced by HHV-6 inhibited IL-12
production. Addition of increasing concentrations of IFN-gamma to the
cultures of HHV-6-infected cells enhanced the expression of IL-12
gene, while the accumulation of IL-10 mRNA was down-regulated.
Determination of protein levels of IL-10 and IL-12 by ELISA also
showed that IFN-gamma increased IL-12 and decreased IL-10 production.
These results suggest that IFN-gamma regulates the production of
IL-10 and IL-12 at transcriptional level mainly through inhibiting
endogenous IL-10
production in HHV-6-infected monocyte/macrophage lineage.
2. Adv Immunol 1996;62:61-130
Interferon-gamma: biology and role in pathogenesis.
Billiau A
Rega Institute, University of Leuven, Belgium.
3. Blood 1995 Mar 1;85(5):1263-71
Published erratum appears in Blood 1995 Jul 1;86(1):418
Immunosuppressive effect of human herpesvirus 6 on T-cell functions:
suppression of interleukin-2 synthesis and cell proliferation.
Flamand L, Gosselin J, Stefanescu I, Ablashi D, Menezes J
Laboratory of Immunovirology, Sainte Justine Hospital, Quebec,
Canada.
Human herpesvirus-6 (HHV-6), the etiologic agent of roseola, is
ubiquitous, establishes latency in the host, and can infect a variety
of immunocompetent cells, with CD4+ T lymphocytes being the targets
in which it replicates most efficiently. The present study was
undertaken to learn more about specific immunobiologic effects of
HHV-6 infection on T-lymphocyte functions. Our data demonstrate that
infection of peripheral blood mononuclear cells (PBMC) by HHV-6
results in suppression of T-lymphocyte functions, as evidenced by
reduced
interleukin-2 (IL-2) synthesis and cellular proliferation. In fact,
HHV-6-infected PBMC secreted 50% less IL-2 than mock-infected cells
after mitogenic stimulation with OKT3 antibody or phytohemmaglutinin
(PHA). The inhibition of IL-2 by HHV-6 was also observed in enriched
T-cell cultures, suggesting a direct effect of this virus on this
cell type. Messenger RNA (mRNA) analysis by reverse-transcriptase
polymerase chain reaction (PCR) indicated that HHV-6 diminishes IL-2
mRNA levels in mitogen-stimulated peripheral blood T cells. These
results were also confirmed by Northern blot using the leukemic
T-cell line Jurkat. This inhibitory effect of HHV-6 did not require
infectious virus, as the use of UV-irradiated HHV-6 produced similar
results. Moreover, HHV-6-infected PBMC showed up to an 85% reduction
in their mitogen-driven proliferative response, as compared with
sham-infected cells. Proliferation of both CD4+ and CD8+ T cells was
affected by HHV-6. Taken together, our data show that infection of T
cells by HHV-6 results in immune suppression characterized by a
downregulation of IL-2 mRNA and protein synthesis accompanied by
diminished cellular proliferation.

The info you posted shows just IGG,IGM,IGA and IGG subclasses. There are
alot of other different immune cells. I haven't done any major research on
IVIG, I only have read about it in different CFIDS books or other info. Some
is pro and some is con. The best thing to do is to find as much information
on it as you can before you start treatment. The only thing that really
concerned me is that some of the information raised concerns about stimulating
overactive parts of the immune system, which alot of our children have. Just do
alot of research first and go from there.
Cheryl

Here is what we did the the results...was this a full panel. What is in the
() is normal ranget
IGG subclass 1 302 (225-1110)
IGG subclass 2 27 (42-375)
IGG subclass 3 26 (9-107)
IGG subclass 4 20 (0-138)
IGG 384 ( 608-1228)
IGA 15 (33-200)
IGM 47 (46-197)
He was basicly a weak or non responder to rubeola, diphtheria,and tenanus
.... On the Rubella he was a 26...the form said anything about 15 was
"positive..IgG antibody to rubella detected which may indicate current or
previousexposure/immunization to rubela."
so what do you think...think IVIG will hurt him...was this a complete panel?

Hi all,
just a thought; in the 'olden days' when Bettleheim wrote his
stuff after being released from the concentration camps....when 'mothers'
were still the sole keepers of the homestead,responsible for
everything...when women were still (even more than today) repressed....it
makes me wonder, what made them depressed? Funny how 'dad' is never
mentioned....funny how it's men who still commit most crime throughout the
world....thank god we wont take it anymore eh ladies? True though, isn't it?
Liz Lucy.

Lici
Great idea and enthusiasm! I currently am in Santa Cruz County. What Bay area
community to you live in? My husband and I will likely be moving to the LA
area sometime next year. Becky

Hi Carol. Did your son have a full immune panel run? I'm curious because
some of the things I have read mention that if they have parts of their
immune system upregulated they can feel alot worse from IVIG because its an
immune stimulant, that it can activate T-cells,etc.
Cheryl

Date: 2 Sep 1999 17:43:26 -0000
From: 1raptor@...
Subject: Re:from a Dr. Goldberg family
Hi Becky,
I am in So. Calif, but I'm a couple of hours north of Dr. Goldberg, so I'm
not in his immediate area. I have one friend locally who has taken her
children down to see Dr. G. Other than that, my only contact has been on
the phone or on-line. We probably need to get a MAT group here in Calif.
like in New York. I think one of the problems is that alot of us are all
over the state. But maybe something could be worked out where alot of us
could get together.
Cheryl
Hi, Cheryl, Becky and Karla,
I am new to the list and trying to catch up on mail. My daughters have been
patients of Dr. G's for 2 years and I know he would love to have a MAT group
out here. I am in the Bay area and know of one other family up here that
sees him. We should figure out how to do this. I'm sure the parents on the
East coast can give us some tips. Let's try to get something going.
Lici
acmarron@...

In a message dated 9/3/99 9:10:00 AM EST, dugua@... writes:
<< Our experience is: our son is NEVER sick. He always recovers very quickly
from
flus, colds etc...Yet, his immune system is totally out of wack.
Ok , That is what I thought. Thanks so much
steph

Our experience is: our son is NEVER sick. He always recovers very quickly from
flus, colds etc...Yet, his immune system is totally out of wack...Explanation:
his immune system is constantly in overdrive, fighting real or perceived
infections. From this chronic state comes obsessive compulsive behavior and
tics...a common occurence in NIDS kids.
Good luck to you !

I have a question about the immune tests. Those who have had their children
tested do you think they are generally in poor health? Or are you having
them tested because of the autism/immune theories?
My son had rashes and yeast infections as a baby, but since turning 2 he has
been so healthy. He is the last to catch a cold or flu and seems to recover
the quickest.
I am just curious if your children are showing uneven levels in their
testing, yet appear healthy.
steph

I suggest you guys talk to Pat Weaver and the rest of us so we can coordinate
our efforts. Right now MAT's priority is to raise funds for phase one trials.
We need all the help we can get...

Cheryl,
I went to Dr. Rapp. Put Cindy on a rotation diet, supplements, EFA's, total
allergen control, total dairy free, meds, and for the last two years she has
not had problems with behavior. SO I got complacent, let her start with the
school lunches, birthday parties and along came spring with the pollen and Ta
Da the summer from Hell! So we are back on track with plans on an appt. with
Dr. G. Dr. Rapp is retired so she is not an option. And I'm a Community
Health Nurse and would never let the parents I work with do what I did. So,
oh well LESSON LEARNED! DO NOT REPEAT! Kathy

So what can we do? Kathy

Cheryl,
What a GREAT idea - a California chapter of MAT .... we have an
appointment with Dr. G. TODAY, I should mention your idea to him!
Sandy
On 2 Sep 99 1raptor@... (1raptor@... <NIDS@onelist.com

Hi Becky,
I am in So. Calif, but I'm a couple of hours north of Dr. Goldberg, so I'm
not in his immediate area. I have one friend locally who has taken her
children down to see Dr. G. Other than that, my only contact has been on
the phone or on-line. We probably need to get a MAT group here in Calif.
like in New York. I think one of the problems is that alot of us are all
over the state. But maybe something could be worked out where alot of us
could get together.
Cheryl

I hate to admit it, but I was one of those type of parents that doctor G. has
mentioned in some of his articles. I had started working with him but after
about four months of treatment, I panicked. Although my son was having many
different symptoms, his uncontrollable rages were the hardest to deal with. He
was still having some at the time, so with the new school year coming fast, I
tried a treatment with a doctor who believed if you treat the brain the immune
system would normalize. Things looked really good at first, until his immune
system was hit by an illness, then my son completely fell apart. He was having
rages all the time, he couldn't do any school work, he couldn't write, he was
into full blown OCD symptoms, panic, severe sensory problems again, he didn't
want any light coming in the windows, would feel sick from short car rides, it
was terrible. I did talk his doctor into putting him back on some meds for
infections until I could get him back to Dr. Goldberg. In hindsight I wish that
I would have stuck with Dr. G. My son missed school from Jan to the end of the
year. He was in really bad shape and it has taken a really long time for his
immune system to start recovering, but it is.
Cheryl

One of the things that gets joked about alot is how Dr. G needs to clone
himself. Right now, the parents group MAT is working very hard to raise
the funds for the NIDS trials. They are working on setting up the drawing
stations to start on the immune profiling study. The goal is to get better
treatments for our children, ones that will hopefully make things alot
easier. At this point we have to address each area that is affecting our
child, diet, any background viral activity,infections, etc. Its a step by
step process, but its definitely worth doing. My son has come so far, but
will his immune system completely normalize without better treatments, I
can't say. All I do know is that his autoimmune/viral problem has to be
improving, since his symptoms are almost gone. Hopefully as things progress
Dr G. will be able to do the things he has talked about, get a foundation
set up, get other doctors trained, etc. so that lack of insurance or access
to doctors, will not keep any child from being helped.
Cheryl

Generally the trial and error is done in a lab in a research situation and
when the results are reported they are duplicated by other groups. This is
tedious and time consuming but that is the reason that when you take
Nitrofurantoin for a urinary tract infection you can feel confident that it
will work and work safely. Sorry but as a health care provider I cannot agree
that trial and error is the way to treat other peoples children. I may do
this with my child. I may report my successful results to this list but I
cannot tell you that my approach will help your child because without the
research I really don't know that it will. I have no right to raise your
hopes and set up your expectations or to steal your valuable time that might
be better spent on another therapy. Kathy R

lol
The cornerstone of scientific method is called 'trial & error'
Scientific evidence has little to do with wether or not something
works for ones child.. Although it's nice to think so.
Like you say what is more important is 'what works for your child'
If one has an answer that works for you,
it's only natural to want to tell others.
And certainly I want to hear about it.
(Scientific evidence or not, cost or not)
As far as charging for it,
If I were them I would increase my charges by ten times.
That way one would get more respect.
--
Neil

Your views are very kind and generous and you sound like a very caring
individual BUT my view on Sarah's diet is very different from yours. As a
health care practitioner of 30 years I can tell you that parents of special
needs children, particularly if their children are seriously effected, are
very vulnerable. They want to help their children, they feel pressured by
time as they see their child lagging farther and farther behind and sometimes
medical science doesn't have much to offer. There may be science in Sarah's
diet BUT the point is, is it valid, is it good science? My grandmother lived
to be a very healthy 107. She had a shot of scotch with a beer chaser before
dinner every afternoon before dinner for her entire life. Can I then conclude
that having a scotch and a beer every day was the cause of her health and
long life and then sell it? No, I cannot, because there are so many other
factors to consider. Tell the world that Sarah's diet helped Sarah but don't
tell the world that Sarah's diet will help Billy unless you can prove it
scientifically. Again my concerns are that Sarah's parents used many
approaches with her and then are saying that the diet made the difference,
Sorry but that, as Mr. Spock says, is illogical. Kathy

In a message dated 08/31/1999 11:09:00 PM Eastern Daylight Time,
feat@... writes:
<< Do
you parents realize just how cute you are when you're mad (and confused)?]
Where should we address our responses to this article? Margie

Nancy:
It's costs very little to run a web site. And guess what? If it were not
for the people who gave me their insight and information, I would not have
gotten this far today. If people withheld their information unless they
were paid, WHY THEM AM I ON THIS LIST? I don't get it. I would tell anyone
who will listen FOR FREE about Steven's diet which has tremendously helped
him with PDD. Personally, I wouldn't try to make any money on this advice
unless I was a doctor or nutritionist and I had empirical data to support my
claims.
We are just people here trying to comminicate different thought, ideas, and
treatments they may help. If I had to pay for all the free advice I had
gotten so far about autism, I WOULD BE BROKE AND I WOULD STILL HAVE A KID
THAT IS NOT PROGRESSING. BUT HE IS..thanks to all you out there who have
called me and let me come and visit with you and email you, ect , ect.
Nancy (Steven's Mom)

dear parents of kids with autism: 9-1-99
i do not have a kid with autism. i have mcs and cfids, about
70% recovered after a 1995 relapse. i took the time to look at
sarah's diet site, and for kids where simple elimination diet
might not be enough, this might be worth investigating. there
is science behind it, but it is so complicated that i found i
had to read it over and over to even begin to comprehend.
in addition, sarah's mom is offering free lectures. if she
chooses to take her valuable time to advise folks at $100,
NO ONE is forced to pay that, after all, parents could go
to the lecture and piece it together themselves for free.
it costs $$ to run a website, theirs is not a free site,
it costs them money, travel on airplanes costs $$$,
calling folks back on the phone costs $$$.
as someone who has volunteered thousands of hours helping
folks for absolutely no money on pesticide issues, I KNOW
how much money this has cost me. i know how many folks
have taken for granted my help, calling me at the very
last minute for - the termite man is here, is this safe?
as if i had the chemical list of every termiticide right
in my hands, ready to answer, just waiting for them.
given that i have given advice generously for free, never
for money, i understand some folks appreciate what they
pay for a lot more. i am not accusing you all of this,
but it may be that sarah's parents found this for some.
this is not to say you all should not be cautious, or that
sarah's diet is right for you, but folks, IF I HAD THE
MONEY i have foregone due to pesticide activism, my
daughter would not have had to borrow to go to college.
the gift is offered by these nice folks, you do NOT
have to take it; you do not have to listen to their
free lectures or pay for consultation. i would much
rather have sarah's parents offer this than hide their
light from the world.
nancy mcfadden
who with diet and a whole lot of other things,
is closer to well than i was two years ago.

Hi
We just received the first part of Shaked's bloodwork results back. So far
everything was normal except
Rubella -IGG which was 98.70 iu/ml
We will be seeing Dr. Goldberg in November in the meanwhile can anyone
throw some light on the possible meaning of this ?
with thanks
Muki

In a message dated 99-08-31 23:08:39 EDT, you write:
<< No one would deny the
anguish of a distraught parent trying to rationalize a child's profound
illness or disability. Any reasonable possibility of a connection to
vaccinations should be scientifically examined.
Was this their little bow to us? I love the use of the word "rationalize"
here. Isn't that what their chosen profession is all about - assuming there
is a reason for a disease or pathology and then using reason to figure out
what it is and how to fix it? If people hadn't tried to "rationalize" why
people suffered some terrible diseases, vaccine wouldn't have been invented
in the first place. But.. I suspect that word is being used here more in the
sense of trying to figure out the unfigarable. Guess we are all just
supposed to be saying C'est la vie!
Maura

WOW do I totally agree. I also have some real concerns about the lack of
scientific base for Sarah's diet. I think it is super that whatever Sarah's
parents are doing, and they are doing so much I don't know how you can
isolate what actually is working, has had such a good result but I do not see
how you can transpose that to others and charge for it. There is absolutely
no question that there are a few children whose symptoms are a result of one
trigger but in my experience as a health care provider they are few and far
between. It is more likely that children with spectrum disorders have the
problems that they do because of a system dysfunction that requires a
multifaceted approach. It would be lovely to find the one key that unlocks
the door wouldn't it? As slow and time consuming as it is there is a lot to
be said for having a scientific base and utilizing the scientific method.
Kathy R

"Pain Killers from our Immune system"
by Sandra & Max Desorgher
"The peptides generated by the immune macrophage cells can be opioid peptides.
Changes made to the diets of autistic
individuals which may reduce specific food derived opioids will not eliminate
the natural potential of the autist to manufacture
opioid peptides."
Sandra Johnson Desorgher will be presenting two free lectures
on this theme at:
Southwest Autism Research Center
1002 E. McDowell Rd.
(10th St. & McDowell)
Phoenix, Arizona
on Thursday, September 2nd at 7-9 p.m.
and on Friday September 3rd at 3-5 p.m.
We will also be available to meet privately for consultations in Phoenix. Please
email us before August 31st, or you can leave an email
message for us with Jennifer Lawrence, who is sponsoring our trip:
jennifer.a.lawrence@...
Or you can leave a message at Windmill Inn of Chandler (602) 812-9600 or (800)
547-4747
Our email address is: sojmed@...
Sandra & Max Desorgher
-------
Sara's Diet - a comprehensive dietary approach to autism
http://personal.atl.bellsouth.net/~sojmed/

I have a question about your diet. After reading Sarah's story I was confused
about how you came up with the conclusion as to which factor was the
important one for removal since you removed so many things from her diet. I
think it is terrific that Sarah has done so well and I wish her much success.
Kathy

I'm a little confused by some of the information
on your site. I know that your information says
that the problems involve Lutein pigments, but all
the foods with pigment are foods with phenol. So
is this just another name for PST phenol sulfer-
transferase enzyme deficiency? Also in your in-
formation you mention the P450 enzymes. It said
the p is for pigment? I thought this was a group
of enzymes responcible for metabolizing all kinds
of things internally and externally.(hormones,
fatty acids,chemicals, medications, etc). I would
really appreciate some clarification.
It seems like the diet it just a more extreme
version of what alot of us are doing. No milk
and dairy,whole wheat,chocolate,red things.
Cheryl

If this works is it being used for all de-myelinating conditions?

The Grafton School Annual Celebration will be at:
407 Elm Street,
Winchester VA 22601
on: Wednesday 1st September from 3pm
We will have a booth at the celebration to provide information
about Dietary Intervention and the other treatment approaches
that have helped to bring Sara out of a state of diagnosed
moderate to severe autism with epilepsy. Sara was declassified
from autism in August of this year, and is also seizure-free for
3 months.
We are:
Sandra Johnson-Desorgher, Nutrition researcher and
developer of Sara's Diet
Max Desorgher, husband and fellow researcher, also
recovered using Sara's Diet.
Sara Johnson, now 16, who will also be there to
share her experiences with diet, AIT, Irlen Lenses, etc.
Individualized Dietary Consultations:
We provide information on diet and nutrition specific to
your individual needs. Our work is based on research
into the immune system irregularities documented
in 96-100% of autists and the identification of a pterin
(lutein - a dietary pigment) as an immune system trigger.
A consultation costs $100. To contact us for a consultation while
we are in Virginia, email us at sojmed@... up until
monday night, or leave a message at Shoneys Inn, Winchester,
tel: 540-665-1700 and we will call you back.
For more information, please read our website and online
papers (see URL below)
Sandra and Max Desorgher
-------
Sara's Diet - a comprehensive dietary approach to autism
http://personal.atl.bellsouth.net/~sojmed/

autism conf in nashville relevant to cfids part 3
DETAILS ON conference in Nashville on Biological Treaments FOR AUTISM
AND PDD: William Shaw PhD will discuss treatments and therapies in detail.
SATURDAY, OCTOBER 23, 1999, sponsored by the great plains laboratory
913-341-8949 http://www.greatplainslaboratory.com
LOCATION: Holiday Inn Select Vanderbilt
2613 West End Avenue, Nashville TN 37203 615-327-4707
I am typing the text of page 3 of the flyer below:
(note I am not centering this, just typing text.)
Sessions
Session 1
Background, research, and the yeast connection
While working at a children's hospital in Kansas City, Dr. Shaw found
a connection between yeast and bacteria and children with autism.
Treatments of these abnormalities result in increased focus and
concentration, improved academic performance, better sleep patterns,
reduced aggressive and self-destructive behaivor, reduced stimming,
and improved speech.
Session 2
The Organic Acid Test: the 62 compounds and their importance
There are a wide variety of elements tested in the organic acids test.
The test has many applications and uses. 80 - 90% of children with
autism have abnormal levels of yeast or fungal metabolites.
Session 3
Treatments and therapies in detail
Useful therapies include: antiyeast therapy, vitamin therapy,
nutritional supplements, dietary interventions, allergy treatments,
therapies for the immune system, and more.
Session 4
New tests available and new treatments to review.
New tests include: gluten and casein sensitivity, immune deficiency
testing, allergy testing, and more. Dr. Shaw will share his thoughts
on secretin in this session as well.
Call Great Plains for a brochure if you are interested 913-341-8949.
their website is http://www.greatplainslaboratory.com
Note, they wrote on the bottom of page 4 that workshop size is limited
register early. remember, the fee is $65.00 before 10-1-99 and
$75.00 after 10-1-99. no cancellations after 10-16-99
i think that's about it, parts 1 AND 2 AND 3 give brochure details
in a style that is not as pretty as the brochure.
end of part 3. any errors are mine.
nancy mcfadden nashville tn
who is NOT organizing this conference, just going,
I have no more details than anyone else.

Would it help though if one had a Myelin problem,
absorbed, used?
--
via Neil S. Clark

autism conf in nashville relevant to cfids part 2
DETAILS ON conference in Nashville on Biological Treaments FOR AUTISM
AND PDD: William Shaw PhD will discuss treatments and therapies in detail.
SATURDAY, OCTOBER 23, 1999, sponsored by the great plains laboratory
913-341-8949 http://www.greatplainslaboratory.com
LOCATION: Holiday Inn Select Vanderbilt
2613 West End Avenue, Nashville TN 37203 615-327-4707
I am typing the text of page 2 of the flyer below:
about the presenter:
Dr. William Shaw received his PhD in biochemistry and human physiology
from the Medical University of South Carolina. He has supervised
endocrinology, toxicology, nutritional biochemistry, and immunology
departments in laboratories around the country.
Dr. Shaw has dedicated the past five years to researching causes of and
treatments for autism. He has been a speaker at many autism conferences
in the past two years, including the AUTISM SOCIETY OF AMERICA NATIONAL
CONFERENCE IN 1996 AND 1999. He was a speaker in California and is
slated to speak at the DEFEAT AUTISM NOW CONFERENCE in New Jersey this year.
PURPOSE OF THE WORKSHOP:
To educate parents and professionals about the biological treatments
available for their children. The workshop will address issues that may
be useful for children with any disorder in which some of the symptoms
of autism are frequently present.
* pervasive developmental disorder
* down's syndrome
* tourette's syndrome
* attention deficit disorder (add)
* hyperactivity
* seizures
* apserger syndrome
* rett's syndrome
You will leave with a complete understanding of the most current
treatments for children with these disorders.
end of page 2 of pamphlet, more to come. any errors are mine.
nancy mcfadden nashville tn
who is NOT organizing this conference, just going,
i have no more details than anyone else.

for those of us who KNOW or wonder about immune/neur/allergy
connection to cfids and or autism, a conference in nashville
BIOLOGICAL TREATMENTS FOR AUTISM AND PDD: William Shaw PhD will
discuss treatments and therapies in detail. He is one of the
leading researchers in the field of autism and related disorders.
Breakthrough treatments that have been helping children improve
SATURDAY, OCTOBER 23, 1999, sponsored by the great plains laboratory
913-341-8949 http://www.greatplainslaboratory.com
LOCATION: Holiday Inn Select Vanderbilt
2613 West End Avenue, Nashville TN 37203 615-327-4707
if you can find CENTENNIAL PARK on a map of Nashville, this is
just about across the street from it. centennial is on every map.
FEE: EARLY REGISTRATION - before October 1, 1999 $65.00
after October 1, 1999 $75.00
no refunds after 10-16-99
Schedule: 8:30 - 9:00 check in and registration
9:00 - 10:30 background, research, and the yeast connection
10:30 - 10:45 break
10:45 - 11:45 the organic acid test: the 62 compounds
and their importance
11:45 - 12:00 question and answer
12:00 - 1:00 lunch
1:00 - 2:00 treatments and therapies in detail
2:00 - 3:00 new tests available and new treatments to review
3:00 - 3:30 question and answer
sponsored by the Autism Society of Middle Tennessee
and the Great Plains Laboratory -
I have cfids, no autistic kids, but I will be there since there is
such an overlap. This is one mile from my house.
Nancy McFadden
Nashville TN

I have two autistics sons, and also we have suspected an immune system
problem in both kids, and also we have an appointment with Dr. Goldberg
-October 13-. I have a lot of hope....
Martha Negrete
mnegrete@...

PDD-NOS (he meets criteria for ADHD and Aspergers, but his self-help skills are
greatly delayed even though his IQ level is in the superior range.) He has had
3 sets of ear tubes and still gets infections, tonsils/adenoids out, chronic
sinusitis. We moved to California and found out about Dr. Goldberg just
recently from our new child psychologist, Dr. Kyle Pontius. We have an
appointment with Dr. Goldberg in October. I was wondering if you could tell us
what to expect, what a NeuroSpect Scan is like, and especially, what the
treatment is for your son and if you have seen improvement. Your post really
excited me, we have always suspected an immune system problem - he has had some
blood testing in that area with some out of normal range results. Of course, no
one could tell us why. Looking forward to hearing from you!! Thanks for your
help. Carolyn (carolyn@...)

Is DMG only a booster of the immune system or is it an immune modulator?
Should children with antibodies against myelin take it or can it be dangerous
for them?
Thanks
Laura from Italy

My son has been through it all since age 2, with the final diagnosis of PDD-NOS
(he meets criteria for ADHD and Aspergers, but his self-help skills are greatly
delayed even though his IQ level is in the superior range.) He has had 3 sets
of ear tubes and still gets infections, tonsils/adenoids out, chronic sinusitis.
We moved to California and found out about Dr. Goldberg just recently from our
new child psychologist, Dr. Kyle Pontius. We have an appointment with Dr.
Goldberg in October. I was wondering if you could tell us what to expect, what
a NeuroSpect Scan is like, and especially, what the treatment is for your son
and if you have seen improvement. Your post really excited me, we have always
suspected an immune system problem - he has had some blood testing in that area
with some out of normal range results. Of course, no one could tell us why.
Looking forward to hearing from you!! Thanks for your help. Carolyn
(carolyn@...)

Hi Karla,
Your experience with your son sounds very
familiar. I knew something was wrong with my son
very early. At five, he was diagnosed as ADHD. I
tried Ritalin like they recommended. He ended up
as a Zombie during the daytime and was completely
out of control at night when the meds wore off.
Soon after that I found out that his problems were
related to his immune system. Its been a very
long road(he's ten now)We have seen many different
doctors, with many ups and downs. I now know that
he has a dysregulated immune system that is
causing an abnormal shut-down of bloodflow in his
brain(confirmed by NeuroSpect Scan at Harbor
General/UCLA. With the help of our current
doctor, Dr. Goldberg, my son is doing so much
better. He has a website
www.neuroimmunedr.com
There is alot of information that explains what
is being found in alot of these children. The
information can be printed out to show your doctor
and in the conference area, you are able to
ask questions. I can tell you that as my son got
older, his symptoms were more like Aspergers, but
I know he has NIDS. Good Luck
Cheryl

Sara's Diet "True Potentia