Re: [NIDS] Transfer factor --- forgive me but

2008-06-30 21:25:40

I have been using T.F. with my son for over a year now. Before using this
product he had one long sinus infection. On multiple antibiotics totally
miserable up all night. He has had maybe one sinus infection (in which he
had to go on medication for) since then. He had a CT scans showing acute
sinusitis. All I know is that it works and not many things do with my child.
I know of dozens of other parents who say the same thing. Life is hard
enough. I can honestly say after all the money I have wasted on products for
the past seven years, this is one of the few that provides results. Just my
2 cents. I don't sell the stuff either.

[NIDS] NK cells

2008-06-30 17:51:53

Have you covered his pillow and mattress? Are the stuffed animals frozen or
washed every 10 days? Re. allergy shots. Can you desensitize an erratic
immune system? Is the allergy testing even reliable when you have a
dysfunctional immune system? I don''t know the answers but I suspect you
can''t and I know that it is not! Kathy NIDS Northern New York

Re: [NIDS] Who presents PECS?

2008-06-30 07:43:18

Tina,
You might want to check directly with PECS for certified trainers in your
area.
The girl we work with is Anne Hoffman, and she is marvelous. She travels
around the world doing pecs training. However, she is in singapore this
month doing training.
Her email is ahoffman@...
Mindy Glassberg is also wonderful, committed and full of energy. Her email
is mglassberg@...
There are a lot of people out there proporting to be "PECS" trained. I've
found that very few of them really are, and miss many of the prompting
strategies and modeling techniques which makes PECS so successful!
Good luck in your search. I swear by PECS...it makes non-verbal kids learn
to communicate so quickly when it's done right. It revolutionized David's
life, and it fit in nicely with his ABA program. PECS eliminated my verbal
child's echolalia and pronoun reversal. I love this program, did I say that?
lol
Traci

Transfer factor --- forgive me but

2008-06-29 22:40:09

http://www.4-life.com/compensation_plan/compensation_plan.html
please see this link it expains the companies compensation plan as I have
listed partially below
Consistent with 4Life's superior line of health and weight loss products,
4Life has developed one of the most generous compensation plans available,
paying up to 64% of commissionable product sales back to the distributors.
This incredible plan helps increase profitability with generous commissions
reaching deep into organizations. It also includes a variety of outstanding
bonus programs including a Rapid Reward program that enables new distributors
to start earning money right away.
In addition to paying out one of the highest percentages in the network
marketing industry, the 4Life compensation plan is completely seamless. This
provides an opportunity for distributors to build strong, global organizations
and receive one monthly bonus check.
The strengths of our compensation plan provide an ultimate opportunity for
business builders to gain financial security and time freedom at any level
they desire. To understand how your financial goals can be achieved with the
4Life Compensation Plan, read more on each portion of the plan below.
they can afford to pay the highest percentages because their product is a
joke. Good Houskeeping rates these thing I look and see if they have done one
on this company
Save your money, Save your kid!
Cathy

Transfer factor are you serious!!!!

2008-06-29 19:42:54

Transfer Factor XF by 4Life Research is extracted from the colostrum of
Grade A dairy cows. 4Life has licensed the patent which identifies transfer
factor in colostrum and the exclusive and proprietary method for extracting
transfer factor from colostrum (US Patent 4,816,563). 4Life Transfer Factor
is tested to ensure transfer factor quality and activity.
Are you guy's for real Do you think Dr. G would ever approve of some that is
one DAIRY and two from Bovine protein one of the most allergenic substances
there is!!!!
Not to mention here we go again MLM so anybody can profit!
Cathy

Cytokine-Associated Emotional and Cognitive Disturbances in Humans

2008-06-29 17:32:41

Arch Gen Psychiatry. 2001;58:445-452
Vol. 58 No. 5,
May 2001
Cytokine-Associated Emotional and Cognitive Disturbances in Humans
http://archpsyc.ama-assn.org/issues/current/abs/yoa20072.html

Re: Natural Killer Cells-we don't have many at all!!

2008-06-29 07:39:46

I've been hearing alot and reading up on this myself the past couple
of weeks. In your post, it sounded like you had heard Dr. G. say that
this is alright after all. Is that correct? I'm not bashing, just
interested in giving this to my son too. My son has any OVER active
nkc count, so will this "cool it down" so to speak? I found
some that is made for kids, it's in gummie bear form I believe, and
has some other great stuff in it to that my son needs very badly.
Where do you get yours and what form does it come in? Thanks in
advance.
Sincerely,
Diane B.

Maryland Autism waiver...

2008-06-29 04:58:26

Hi all,
Here is the site for the Maryland autism waiver. Lois
http://cte.jhu.edu/dse_eis/autism-fact-sheet.html

CFS Toronto

2008-06-28 23:03:36

Hey Ya'll,
FYI For anyone that can get there and spread the news about NIDS:
Please note below details of an up-coming Pain Conference in Toronto.Please
pass on to those you think might want to attend.
Lydia E. Neilson, President CEO
NATIONAL ME/FM ACTION NETWORK
3836 Carling Avenue
Nepean, ON K2K 2Y6 Canada
Tel/Fax: (613) 829-6667
E-mail: ag922@...
Web: http://www3.sympatico.ca/me-fm.action/
TORONTO REHAB PAIN MANAGEMENT CONFERENCE
THURSDAY, JUNE 7TH, 2001
The Toronto Rehabilitation Institute is hosting the "4th Pain Management
Conference: New Frontiers in Pain" on Thursday, June 7th, 2001 in downtown
Toronto at the St. Lawrence Centre for the Arts.
The Conference Planning Committee, a group of pain specialists and other
healthcare professionals, have put together an excellent roster of speakers
and topics.
Target audience is all healthcare professionals from acute and rehab
hospitals, long-term care facilities and community agencies. From previous
years', participants are about 40% nursing and 60% everyone else.
On behalf of the Pain Management Conference Planning Committee, thanks,
Jayne Oltmann
Conference Assistant
Details Healthcare Conferences
584 Clinton Street,
Toronto, ON
M6G 2Z6
Tel. 416) 516-6678
Fax (416) 516-4782
Tina M. Hendrix
CureNIDS2000@...
President, NIDS Coalition, Northern California
Neuro-Immune Dysfunction Syndromes
Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,
etc.

Who presents PECS?

2008-06-28 18:14:57

Hi Ya'll,
Our Sonoma Co. Autism Task Force is looking for someone who can give an
indepth training on PECS. We are located in Northern CA, just above San
Francisco. Please reply to me, and i will present the info to our task force.
Thanx,
Tina
Tina M. Hendrix
CureNIDS2000@...
President, NIDS Coalition, Northern California
Neuro-Immune Dysfunction Syndromes
Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,
etc.

Need tutor/therapist

2008-06-28 12:58:54

Hi,
An off line parent contact of mine needs a 1:1 tutor/therapist for her 7 yr
old ASD son. She lives in Rohnert Park, Ca (Sonoma Co.). This is a paid
position with training provided. Please respond to me and I will forward
info to her. Thanx!
Tina
Tina M. Hendrix
CureNIDS2000@...
President, NIDS Coalition, Northern California
Neuro-Immune Dysfunction Syndromes
Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,
etc.

Famvir dosage and frequency

2008-06-28 01:28:44

Our son also weighs 42 lbs and now takes a total of 250mg of Famvir daily.
He took Valtrex previously and had some behaviors (anxiety, hyperactivity)
that stopped with the Famvir. He is also doing very well on the total
regimen; I can't attribute it to any one thing.
Best,
Vicki

Study of effects of DMSA chelation / lead levels below 45 microg

2008-06-27 22:46:40

Succimer (Systemic
Brand Names
Some commonly used brand names are:
In the U.S.--
Chemet
Other commonly used names are dimercaptosuccinic acid and DMSA .
N Engl J Med 2001 May 10;344(19):1421-6 Related Articles, Books, LinkOut
Comment in:
N Engl J Med. 2001 May 10;344(19):1470-1
The effect of chelation therapy with succimer on neuropsychological
development in children exposed to lead.
Rogan WJ, Dietrich KN, Ware JH, Dockery DW, Salganik M, Radcliffe J, Jones
RL, Ragan NB, Chisolm JJ Jr, Rhoads GG; Treatment of Lead-Exposed Children
Trial Group.
National Institute of Environmental Health Sciences, Research Triangle Park,
NC 27709, USA. rogan@...
BACKGROUND: Thousands of children, especially poor children living in
deteriorated urban housing, are exposed to enough lead to produce cognitive
impairment. It is not known whether treatment to reduce blood lead levels
prevents or reduces such impairment. METHODS: We enrolled 780 children with
blood lead levels of 20 to 44 microg per deciliter (1.0 to 2.1 micromol per
liter) in a randomized, placebo-controlled, double-blind trial of up to
three 26-day courses of treatment with succimer, a lead chelator that is
administered orally. The children lived in deteriorating inner-city housing
and were 12 to 33 months of age at enrollment; 77 percent were black, and 5
percent were Hispanic. Follow-up included tests of cognitive, motor,
behavioral, and neuropsychological function over a period of 36 months.
RESULTS: During the first six months of the trial, the mean blood lead level
in the children given succimer was 4.5 microg per deciliter (0.2 micromol
per liter) lower than the mean level in the children given placebo (95
percent confidence interval, 3.7 to 5.3 microg per deciliter [0.2 to 0.3
micromol per liter]). At 36 months of follow-up, the mean IQ score of
children given succimer was 1 point lower than that of children given
placebo, and the behavior of children given succimer was slightly worse as
rated by a parent. However, the children given succimer scored slightly
better on the Developmental Neuropsychological Assessment, a battery of
tests designed to measure neuropsychological deficits thought to interfere
with learning. All these differences were small, and none were statistically
significant. CONCLUSIONS: Treatment with succimer lowered blood lead levels
but did not improve scores on tests of cognition, behavior, or
neuropsychological function in children with blood lead levels below 45
microg per deciliter. Since succimer is as effective as any lead chelator
currently available, chelation therapy is not indicated for children with
these blood lead levels.
Publication Types:
Clinical trial
Multicenter study
Randomized controlled trial
PMID: 11346806 [PubMed - indexed for MEDLINE]

Re: [NIDS] San Antonio - videotapes

2008-06-27 17:52:37

To All Who Are Requesting Video Tapes:
Please visit the NIDS.net web site and click on the 'Order San Antonio Tapes'
link.
Send an e-mail through the request link or you can e-mail directly to
info@... . Place 'Order Tapes' in the subject section and I will
respond with specifics.
Thank You,
Marc
NIDS Parent Coalition- Southern California Chapter

Re: [NIDS] injections - kutapressin, etc

2008-06-27 10:53:30

We give our daughter shots at night after she is asleep. We use Emla cream
to deaden the area, and then inject the shot. She does not even wake up,
thank goodness. We have been using Kutapressin for about 9 months and have
seen some improvement in eye contact and awareness. The shots are injected
into her buttocks.
Bonnie

Famvir dosage and frequency

2008-06-27 05:39:05

We give our daughter 125mg twice a day. Hope this helps.

Famvir dosage and frequency

2008-06-26 22:20:44

Hi
My almost 5 year old son weighs 18.5 kg (I think that comes out as about
47 lbs) and he gets 125mg Famvir twice a day. He probably weighed what
your son weighs when he started. When Dr G tried to reducethe dosage to
62.5 mg twice a day we noticed a significant regression.
Now that we are giving him Kutapressin, we are going to try and reduce the
dose again.
Muki

Re: Famvir dosage and frequency

2008-06-26 16:10:16

I'm curious to ask those using famvir--what doseage are you using, and how
often are you giving it. My son is only receiving it once a day at 75mg, and
I've heard of people using it as much as three times a day.
Just fyi, my son is 42 lbs. The famvir seems to be an improvement over the
valtrex (valtrex made him violently ill for a LONG time), but I suspect our
dosage is way to low. Our neurologist is great about listening to what other
NIDS families are doing, so I decided to take a poll, lol.
Our youngest son was so easy to lead back to normal immune function (it took
about a year, and he seems so normal now...), but his brother is giving us
fits! But David's immune system was different...he had way too many NK cells
as opposed to too few....total immune hyperactivity. I'm wondering if we're
missing a piece of the puzzle with him.
Thanks to all in advance.

[NIDS] NK cells

2008-06-26 10:45:44

We started our son on EPD (allgery shots) and have seen
incredible improvement in all areas. These are special shots
that are not available here in the States and we travel to Canada
every two months for them but they are well worth it. His behavior
and focus/alertness has improved with each one.
Amanda
NetZero Platinum
No Banner Ads and Unlimited Access
Sign Up Today - Only $9.95 per month!
http://www.netzero.net

injections - kutapressin, etc

2008-06-26 03:37:50

How do you inject 5 yr olds?
Where on the body?
How often?
Needle size?
Amount injected?
Thimerosal & preservative free?

Molecular Approaches to Diagnosing and Managing Infectious Diseases: Plz read.

2008-06-26 00:59:08

Molecular Approaches to Diagnosing and Managing Infectious Diseases:
Practicality and Costs
Michael A. Pfaller University of Iowa College of Medicine, Iowa City,
Iowa, USA
[Emerging Infectious Diseases (7)2, 2001. Centers for Disease Control]
Abstract
As molecular techniques for identifying and detecting microorganisms
in the clinical microbiology laboratory have become routine,
questions about the cost of these techniques and their contribution
to patient care need to be addressed. Molecular diagnosis is most
appropriate for infectious agents that are difficult to detect,
identify, or test for susceptibility in a timely fashion with
conventional methods.
Introduction
The tools of molecular biology have proven readily adaptable for use
in the clinical diagnostic laboratory and promise to be extremely
useful in diagnosis, therapy, and epidemiologic investigations and
infection control[1,2]. Although technical issues such as ease of
performance, reproducibility, sensitivity, and specificity of
molecular tests are important, cost and potential contribution to
patient care are also of concern[3]. Molecular methods may be an
improvement over conventional microbiologic testing in many ways.
Currently, their most practical and useful application is in
detecting and identifying infectious agents for which routine growth-
based culture and microscopy methods may not be adequate[4-7].
Nucleic acid-based tests used in diagnosing infectious diseases use
standard methods for isolating nucleic acids from organisms and
clinical material and restriction endonuclease enzymes, gel
electrophoresis, and nucleic acid hybridization techniques to analyze
DNA or RNA[6]. Because the target DNA or RNA may be present in very
small amounts in clinical specimens, various signal amplification and
target amplification techniques have been used to detect infectious
agents in clinical diagnostic laboratories[5,6]. Although mainly a
research tool, nucleic acid sequence analysis coupled with target
amplification is clinically useful and helps detect and identify
previously uncultivatable organisms and characterize antimicrobial
resistance gene mutations, thus aiding both diagnosis and treatment
of infectious diseases[5,8,9]. Automation and high-density
oligonucleotide probe arrays (DNA chips) also hold great promise for
characterizing microbial pathogens[6].
Although most clinicians and microbiologists enthusiastically welcome
the new molecular tests for diagnosing infectious disease, the high
cost of these tests is of concern[3]. Despite the probability that
improved patient outcome and reduced cost of antimicrobial agents and
length of hospital stay will outweigh the increased laboratory costs
incurred through the use of molecular testing, such savings are
difficult to document[3,10,11]. Much of the justification for
expenditures on molecular testing is speculative[11]; however, the
cost of equipment, reagents, and trained personnel is real and
substantial, and reimbursement issues are problematic[3,11]. Given
these concerns, a facility's need for molecular diagnostic testing
for infectious diseases should be examined critically by the affected
clinical and laboratory services. In many instances, careful
overseeing of test ordering and prudent use of a reference laboratory
may be the most viable options.
Practical Applications of Molecular Methods in the Clinical
Microbiology Laboratory
Commercial kits for the molecular detection and identification of
infectious pathogens have provided a degree of standardization and
ease of use that has facilitated the introduction of molecular
diagnostics into the clinical microbiology laboratory (Table 1). The
use of nucleic acid probes for identifying cultured organisms and for
direct detection of organisms in clinical material was the first
exposure that most laboratories had to commercially available
molecular tests. Although these probe tests are still widely used,
amplification-based methods are increasingly employed for diagnosis,
identification and quantitation of pathogens, and characterization of
antimicrobial-drug resistance genes. Commercial amplification kits
are available for some pathogens (Table 1), but some clinically
important pathogens require investigator-designed or "home-brew"
methods (Table 2). In addition, molecular strain typing, or
genotyping, has proven useful in guiding therapeutic decisions for
certain viral pathogens and for epidemiologic investigation and
infection control[2,12].
Detection and Identification of Pathogens Without Target Amplification
Commercial kits containing non-isotopically labeled nucleic acid
probes are available for direct detection of pathogens in clinical
material and identification of organisms after isolation in culture
(Table 1). Use of solution-phase hybridization has allowed tests to
be performed singly or in batches in a familiar microwell format.
Although direct detection of organisms in clinical specimens by
nucleic acid probes is rapid and simple, it suffers from lack of
sensitivity. Most direct probe detection assays require at least 104
copies of nucleic acid per microliter for reliable detection, a
requirement rarely met in clinical samples without some form of
amplification. Amplification of the detection signal after probe
hybridization improves sensitivity to as low as 500 gene copies per
microliter and provides quantitative capabilities. This approach has
been used extensively for quantitative assays of viral load (HIV,
hepatitis B virus [HBV] and hepatitis C virus [HCV]) (Table 1) but
does not match the analytical sensitivity of target amplification-
based methods, such as polymerase chain reaction (PCR), for detecting
organisms.
The commercial probe systems that use solution-phase hybridization
and chemiluminescence for direct detection of infectious agents in
clinical material include the PACE2 products of Gen-Probe and the
hybrid capture assay systems of Digene and Murex (Table 1). These
systems are user friendly, have a long shelf life, and are adaptable
to small or large numbers of specimens. The PACE2 products are
designed for direct detection of both Neisseria gonorrhoeae and
Chlamydia trachomatis in a single specimen (one specimen, two
separate probes). The hybrid capture systems detect human papilloma
virus (HPV) in cervical scrapings, herpes simplex virus (HSV) in
vesicle material, and cytomegalovirus (CMV) in blood and other
fluids. All these tests have demonstrated sensitivity exceeding that
of culture or immunologic methods for detecting the respective
pathogens but are less sensitive than PCR or other target
amplification-based methods.
The signal amplification-based probe methods for detection and
quantitation of viruses (HBV, HCV, HIV) are presented in an enzyme
immunoassay-like format and include branched chain DNA probes
(Chiron) and QB replicase (Gene-Trak) methods (Table 1). These
methods are not as sensitive as target amplification-based methods
for detection of viruses; however, the quantitative results have
proven useful for determining viral load and prognosis and for
monitoring response to therapy[13].
Probe hybridization is useful for identifying slow-growing organisms
after isolation in culture using either liquid or solid media.
Identification of mycobacteria and other slow-growing organisms such
as the dimorphic fungi (Histoplasma capsulatum, Coccidioides immitis,
and Blastomyces dermatitidis) has certainly been facilitated by
commercially available probes. All commercial probes for identifying
organisms are produced by Gen-Probe and use acridinium ester-labeled
probes directed at species-specific rRNA sequences (Table 1). Gen-
Probe products are available for the culture identification of
Mycobacterium tuberculosis, M. avium-intracellulare complex, M.
gordonae, M. kansasii, Cryptococcus neoformans, the dimorphic fungi
(listed above), N. gonorrhoeae, Staphylococcus aureus, Streptococcus
pneumoniae, Escherichia coli, Haemophilus influenzae, Enterococcus
spp., S. agalactiae, and Listeria monocytogenes. The sensitivity and
specificity of these probes are excellent, and they provide species
identification within one working day. Because most of the bacteria
listed, plus C. neoformans, can be easily and efficiently identified
by conventional methods within 1 to 2 days, many of these probes have
not been widely used. The mycobacterial probes, on the other hand,
are accepted as mainstays for the identification of M. tuberculosis
and related species[7].
Nucleic Acid Amplification
Nucleic acid amplification provides the ability to selectively
amplify specific targets present in low concentrations to detectable
levels; thus, amplification-based methods offer superior performance,
in terms of sensitivity, over the direct (non-amplified) probe-based
tests. PCR (Roche Molecular Systems, Branchburg, NJ) was the first
such technique to be developed and because of its flexibility and
ease of performance remains the most widely used molecular diagnostic
technique in both research and clinical laboratories. Several
different amplification-based strategies have been developed and are
available commercially (Table 1). Commercial amplification-based
molecular diagnostic systems for infectious diseases have focused
largely on systems for detecting N. gonorrhoeae, C. trachomatis, M.
tuberculosis, and specific viral infections (HBV, HCV, HIV, CMV, and
enterovirus) (Table 1). Given the adaptability of PCR, numerous
additional infectious pathogens have been detected by investigator-
developed or home-brew PCR assays[5] (Table 2). In many instances,
such tests provide important and clinically relevant information that
would otherwise be unavailable since commercial interests have been
slow to expand the line of products available to clinical
laboratories. In addition to qualitative detection of viruses,
quantitation of viral load in clinical specimens is now recognized to
be of great importance for the diagnosis, prognosis, and therapeutic
monitoring for HCV, HIV, HBV, and CMV[13]. Both PCR and nucleic acid
strand-based amplification systems are available for quantitation of
one or more viruses (Table 1).
The adaptation of amplification-based test methods to commercially
available kits has served to optimize user acceptability, prevent
contamination, standardize reagents and testing conditions, and make
automation a possibility. It is not clear to what extent the levels
of detection achievable by the different amplification strategies
differ. None of the newer methods provides a level of sensitivity
greater than that of PCR. In choosing a molecular diagnostic system,
one should consider the range of tests available, suitability of the
method to workflow, and cost[6]. Choosing one amplification-based
method that provides testing capabilities for several pathogens is
certainly practical.
Amplification-based methods are also valuable for identifying
cultured and non-cultivatable organisms[5]. Amplification reactions
may be designed to rapidly identify an acid-fast organism as M.
tuberculosis or may amplify a genus-specific or "universal" target,
which then is characterized by using restriction endonuclease
digestion, hybridization with multiple probes, or sequence
determination to provide species or even subspecies delineation
[4,5,14]. Although identification was initially applied to slow-
growing mycobacteria, it has applications for other pathogens that
are difficult or impossible to identify with conventional methods.
Detecting Antimicrobial-Drug Resistance
Molecular methods can rapidly detect antimicrobial-drug resistance in
clinical settings and have substantially contributed to our
understanding of the spread and genetics of resistance[9].
Conventional broth- and agar-based antimicrobial susceptibility
testing methods provide a phenotypic profile of the response of a
given microbe to an array of agents. Although useful for selecting
potentially useful therapeutic agents, conventional methods are slow
and fraught with problems. The most common failing is in the
detection of methicillin resistance in staphylococci, which may be
expressed in a very heterogeneous fashion, making phenotypic
characterization of resistance difficult[9,15]. Currently, molecular
detection of the resistance gene, mec A, is the standard against
which phenotypic methods for detection of methicillin resistance are
judged[9,15,16].
Molecular methods may be used to detect specific antimicrobial-drug
resistance genes (resistance genotyping) in many organisms (Table 3)
[8,9]. Detection of specific point mutations associated with
resistance to antiviral agents is also increasingly important[17,18].
Screening for mutations in an amplified product may be facilitated by
the use of high-density probe arrays (Gene chips)[6].
Despite its many potential advantages, genotyping will not likely
replace phenotypic methods for detecting antimicrobial-drug
resistance in the clinical laboratory in the near future. Molecular
methods for resistance detection may be applied directly to the
clinical specimen, providing simultaneous detection and
identification of the pathogen plus resistance characterization[9].
Likewise, they are useful in detecting resistance in viruses, slow-
growing or nonviable organisms, or organisms with resistance
mechanisms that are not reliably detected by phenotypic methods
[9,19]. However, because of their high specificity, molecular methods
will not detect newly emerging resistance mechanisms and are unlikely
to be useful in detecting resistance genes in species where the gene
has not been observed previously[19]. Furthermore, the presence of a
resistance gene does not mean that the gene will be expressed, and
the absence of a known resistance gene does not exclude the
possibility of resistance from another mechanism. Phenotypic
antimicrobial susceptibility testing methods allow laboratories to
test many organisms and detect newly emerging as well as established
resistance patterns.
Molecular Epidemiology
Laboratory characterization of microbial pathogens as biologically or
genetically related is frequently useful in investigations[12,20,21].
Several different epidemiologic typing methods have been applied in
studies of microbial pathogens (Table 4). The phenotypic methods have
occasionally been useful in describing the epidemiology of infectious
diseases; however, they are too variable, slow, and labor-intensive
to be of much use in most epidemiologic investigations. Newer DNA-
based typing methods have eliminated most of these limitations and
are now the preferred techniques for epidemiologic typing. The most
widely used molecular typing methods include plasmid profiling,
restriction endonuclease analysis of plasmid and genomic DNA,
Southern hybridization analysis using specific DNA probes, and
chromosomal DNA profiling using either pulsed-field gel
electrophoresis (PFGE) or PCR-based methods[12,20]. All these methods
use electric fields to separate DNA fragments, whole chromosomes, or
plasmids into unique patterns or fingerprints that are visualized by
staining with ethidium bromide or by nucleic acid probe hybridization
(Figure). Molecular typing is performed to determine whether
different isolates give the same or different results for one or more
tests. Epidemiologically related isolates share the same DNA profile
or fingerprint, whereas sporadic or epidemiologically unrelated
isolates have distinctly different patterns (Figure). If isolates
from different patients share the same fingerprint, they probably
originated from the same clone and were transmitted from patient to
patient by a common source or mechanism.
Figure. Pulsed-field gel electrophoresis (PFGE) profiles of
Staphylococcus aureus isolates digested with Sma 1. A variety of PFGE
profiles are demonstrated in these 23 isolates.
Molecular typing methods have allowed investigators to study the
relationship between colonizing and infecting isolates in individual
patients, distinguish contaminating from infecting strains, document
nosocomial transmission in hospitalized patients, evaluate
reinfection versus relapse in patients being treated for an
infection, and follow the spread of antimicrobial-drug resistant
strains within and between hospitals over time[12]. Most available
DNA-based typing methods may be used in studying nosocomial
infections when applied in the context of a careful epidemiologic
investigation[12,21]. In contrast, even the most powerful and
sophisticated typing method, if used indiscriminately in the absence
of sound epidemiologic data, may provide conflicting and confusing
information.
Financial Considerations
Molecular testing for infectious diseases includes testing for the
host's predisposition to disease, screening for infected or colonized
persons, diagnosis of clinically important infections, and monitoring
the course of infection or the spread of a specific pathogen in a
given population. It is often assumed that in addition to improved
patient care, major financial benefits may accrue from molecular
testing because the tests reduce the use of less sensitive and
specific tests, unnecessary diagnostic procedures and therapies, and
nosocomial infections[11]. However, the inherent costs of molecular
testing methods, coupled with variable and inadequate reimbursement
by third-party payers and managed-care organizations, have limited
the introduction of these tests into the clinical diagnostic
laboratory.
Not all molecular diagnostic tests are extremely expensive. Direct
costs vary widely, depending on the test's complexity and
sophistication. Inexpensive molecular tests are generally kit based
and use methods that require little instrumentation or technologist
experience. DNA probe methods that detect C. trachomatis or N.
gonorrhoeae are examples of low-cost molecular tests. The more
complex molecular tests, such as resistance genotyping, often have
high labor costs because they require experienced, well-trained
technologists. Although the more sophisticated tests may require
expensive equipment (e.g., DNA sequencer) and reagents, advances in
automation and the production of less-expensive reagents promise to
decrease these costs as well as technician time. Major obstacles to
establishing a molecular diagnostics laboratory that are often not
considered until late in the process are required licenses, existing
and pending patents, test selection, and billing and reimbursement
[22].
Reimbursement issues are a major source of confusion, frustration,
and inconsistency. Reimbursement by third-party payers is confounded
by lack of Food and Drug Administration (FDA) approval and Current
Procedural Terminology (CPT) codes for many molecular tests. In
general, molecular tests for infectious diseases have been more
readily accepted for reimbursement; however, reimbursement is often
on a case-by-case basis and may be slow and cumbersome. FDA approval
of a test improves the likelihood that it will be reimbursed but does
not ensure that the amount reimbursed will equal the cost of
performing the test.
Perhaps more than other laboratory tests, molecular tests may be
negatively affected by fee-for-service managed-care contracts and
across-the-board discounting of laboratory test fees. Such measures
often result in reimbursement that is lower than the cost of
providing the test. Although molecular tests may be considered a
means of promoting patient wellness, the financial benefits of
patient wellness are not easily realized in the short term[11].
Health maintenance organizations (HMOs) and managed-care
organizations often appear to be operating on shorter time frames,
and their administrators may not be interested in the long-term
impact of diagnostic testing strategies.
Molecular screening programs for infectious diseases are developed to
detect symptomatic and asymptomatic disease in individuals and
groups. Persons at high risk, such as immunocompromised patients or
those attending family planning or obstetrical clinics, are screened
for CMV and Chlamydia, respectively. Likewise, all blood donors are
screened for bloodborne pathogens. The financial outcome of such
testing is unknown. The cost must be balanced against the benefits of
earlier diagnosis and treatment and societal issues such as disease
epidemiology and population management.
One of the most highly touted benefits of molecular testing for
infectious diseases is the promise of earlier detection of certain
pathogens. The rapid detection of M. tuberculosis directly in
clinical specimens by PCR or other amplification-based methods is
quite likely to be cost-effective in the management of tuberculosis
[7]. Other examples of infectious disease that are amenable to
molecular diagnosis and for which management can be improved by this
technology include HSV encephalitis, Helicobacter pylori infection,
and neuroborreliosis caused by Borrelia burgdorferi. For HSV
encephalitis, detection of HSV in cerebrospinal fluid (CSF) can
direct specific therapy and eliminate other tests including brain
biopsy. Likewise, detection of H. pylori in gastric fluid can direct
therapy and obviate the need for endoscopy and biopsy. PCR detection
of B. burgdorferi in CSF is helpful in differentiating
neuroborreliosis from other chronic neurologic conditions and chronic
fatigue syndrome.
As discussed earlier, molecular tests may be used to predict disease
response to specific antimicrobial therapy. Detection of specific
resistance genes (mec A, van A) or point mutations resulting in
resistance has proven efficacious in managing disease. Molecular-
based viral load testing has become standard practice for patients
with chronic hepatitis and AIDS. Viral load testing and genotyping of
HCV are useful in determining the use of expensive therapy such as
interferon and can be used to justify decisions on extent and
duration of therapy. With AIDS, viral load determinations plus
resistance genotyping have been used to select among the various
protease inhibitor drugs available for treatment, improving patient
response and decreasing incidence of opportunistic infections.
Pharmacogenomics is the use of molecular-based tests to predict the
response to specific therapies and to monitor the response of the
disease to the agents administered. The best examples of
pharmacogenomics in infectious diseases are the use of viral load and
resistance genotyping to select and monitor antiviral therapy of AIDS
and chronic hepatitis[17,18]. This application improves disease
outcome; shortens length of hospital stay; reduces adverse events and
toxicity; and facilitates cost-effective therapy by avoiding
unnecessary expensive drugs, optimizing doses and timing, and
eliminating ineffective drugs.
Molecular strain typing of microorganisms is now well recognized as
an essential component of a comprehensive infection control program
that also involves the infection control department, the infectious
disease division, and pharmacy[10, 21]. Molecular techniques for
establishing presence or absence of clonality are effective in
tracking the spread of nosocomial infections and streamlining the
activities of the infection control program[21,23]. A comprehensive
infection control program uses active surveillance by both infection
control practitioners and the clinical microbiology laboratory to
identify clusters of infections with a common microbial phenotype
(same species and antimicrobial susceptibility profile). The isolates
are then characterized in the laboratory by using one of a number of
molecular typing methods (Table 4) to confirm or refute clonality.
Based on available epidemiologic and molecular data, the hospital
epidemiologist then develops an intervention strategy. Molecular
typing can shorten or prevent an epidemic[23] and reduce the number
and cost of nosocomial infections (Table 5)[10]. Hacek et al.[10]
analyzed the medical and economic benefits of an infection control
program that included routine determination of microbial clonality
and found that nosocomial infections were significantly decreased and
more than $4 million was saved over a 2-year period (Table 5).
The true financial impact of molecular testing will only be realized
when testing procedures are integrated into total disease assessment.
More expensive testing procedures may be justified if they reduce the
use of less-sensitive and less-specific tests and eliminate
unnecessary diagnostic procedures and ineffective therapies.
Dr. Pfaller is professor and director of the Molecular Epidemiology
and Fungus Testing Laboratory at the University of Iowa College of
Medicine and College of Public Health. His research focuses on the
epidemiology of nosocomial infections and antimicrobial-drug
resistance.
Address for correspondence: Michael Pfaller, Medical Microbiology
Division, C606 GH, Department of Pathology, University of Iowa
College of Medicine, Iowa City, Iowa 52242, USA; fax:319-356-4916; e-
mail: michael-pfaller@...
Table 1. FDA-approved molecular diagnostic tests for infectious
diseasea
Test Method Companyb
Chlamydia trachomatis detection PCRc
LCR
TMA
Hybrid capture Roche
Abbott
Gen-Probe
Digene
Neisseria gonorrhoeae detection LCR
Hybrid capture Abbott
Digene
C. trachomatis/N. gonorrhoeae
screening/detection Hybridization
SDR Gen-Probe
Becton-Dickinson
Mycobacterium tuberculosis detection PCR
TMA Roche
Gen-Probe
HPV screening Hybrid capture Digene
CMV Hybrid capture
NASBA Digene
Organon Teknika
Grp A strep detection Hybridization Gen-Probe
HIV quantitation PCR Roche
Gardnerella, T. vaginalis, and Candida Hybridization Becton-Dickinson
Culture confirmation for bacteria and fungi Hybridization Gen-Probe
a The table contains examples of commercially available methods and
is not intended to be all-inclusive. Websites of the principle
manufacturers are a useful source of the most up-to-date information.
b Companies: Digene, Silver Spring, MD; Chiron, Emeryville, CA;
Roche, Branchburg, NJ; Organon Teknika, Durham, NC; Murex/Abbott,
Abbott Park, IL; Gen-Probe, San Diego, CA; Abbott, Abbott Park, IL;
Becton-Dickinson, Cockeysville, MD.
c PCR = polymerase chain reaction; LCR = ligase chain reaction; TMA =
transcription-mediated amplification; SDR = strand displacement
reaction; NASBA = nucleic acid strand-based amplification.
Table 2. Noncommercial nucleic acid-based tests for clinically
important viral and bacterial pathogensa
Organism Specimen type Clinical indication
Epstein-Barr virus (EBV) Cerebrospinal fluid (CSF) EBV
lymphoproliferative disorder
Herpes simplex virus (HSV) types 1 and 2 CSF
Vitreous humor Encephalitis
Varicella-zoster virus (VZV) Various tissues VZV reactivation
JC virus CSF Progressive multifocal leukoencephalopathy
Enterovirus CSF Aseptic meningitis
Parvovirus B19 Amniotic fluid
Serum Hydrops fetalis
Anemia
Adenovirus Urine
Tissues
Blood Immunocompromised patients, transplant recipients
Ehrlichia Blood Human granulocytic and monocytic ehrlichiosis
Bordetella pertussis Nasopharyngeal aspirate Whooping cough
Legionella pneumophila Respiratory Atypical pneumonia
Chlamydia pneumoniae Respiratory Atypical pneumonia
Mycoplasma pneumoniae Respiratory Atypical pneumonia
Helicobacter pylori Gastric fluid
Stool Peptic ulcer disease
a All tests use polymerase chain reaction. The list is not all-
inclusive.
Table 3. Molecular methods for detecting antimicrobial resistancea
Organism(s) Antimicrobial agent(s) Gene Detection method
Staphylococci Methicillin mec Ab Standard DNA probe
Oxacillin Branched chain DNA probe
PCR
Enterococci Vancomycin van A, B, C, Dc Standard DNA probe
PCR
Enterobacteriaceae Beta-lactams blaTEMandblaSHVd Standard probe
Haemophilus influenzae PCR and RFLP
Neisseria gonorrhoeae PCR and sequencing
Enterobacteriaceae and gram-positive cocci Quinolones Point mutations
in gyr A, gyr B, par C and par E PCR and sequencing
Mycobacterium tuberuclosise Rifampin Point mutations in rpo B PCR and
SSCP
PCR and sequencing
Isoniazid Point mutations in kat G, inh A, and ahp C PCR and SSCP
Ethambutol Point mutations in emb B PCR and RFLP
Streptomycin Point mutations in rps L and rrs PCR and sequencing
Herpes virusesf Acyclovir and related drugs Mutations or deletions in
the TK gene PCR and sequencing
Foscarnet Point mutations in DNA polymerase gene PCR and sequencing
HIVg Nucleoside reverse transcriptase inhibitors Point mutations in
RT gene PCR and sequencing
PCR and LIPA
Protease inhibitors Point mutations in PROT gene PCR and sequencing
a Adapted from Pfaller[2].
b mecA encodes for the altered penicillin binding protein PBP2a';
phenotypic methods may require 48 hours incubation or more to detect
resistance and are less than 100% sensitive. Detection of mecA has
potential for clinical application in specific circumstances.
c Vancomycin resistance in enterococci may be related to one of four
distinct resistance genotypes of which vanA and vanB are most
important. Genotypic detection of resistance is useful in validation
of phenotypic methods.
d The genetic basis of resistance to beta-lactam antibiotics is
extremely complex. The blaTEM and blaSHV genes are the two most
common sets of plasmid encoded beta-lactamases. The presence of
either a blaTEM or blaSHV gene implies ampicillin resistance.
Variants of the blaTEM and blaSHV genes (extended spectrum beta-
lactamases) may also encode for resistance to a range of third-
generation cephalosporins and to monobactams.
e M. tuberculosis is very slow growing. Four weeks or more may be
required to obtain phenotypic susceptibility test results. Detection
of resistance genes in M. tuberculosis has potential for clinical
application in the short term.
f There are no phenotypic methods sufficiently practical for routine
clinical detection of resistance to antiviral agents. Genotypic
methods represent a practical method for routine detection of
antiviral resistance.
g Abbreviations not defined in text: RFLP, restriction fragment
length polymorphism; SSCP, single-stranded conformational
polymorphism; LIPA, line probe assay; TK, thymidine kinase; RT,
reverse transcriptase; PROT, protease.
Table 4. Genotypic methods for epidemiologic typing of
microorganismsa,b
Method Examples Comments
Plasmid analysis Staphylococci Plasmids may be digested with
restriction endonucleases
Enterobacteriaceae Only useful when organisms carry plasmids
Restriction endonuclease analysis of chromosomal DNA with
conventional electrophoresis Enterococci Large number of bandst
Staphylococcus aureus Difficult to interpret
Clostridium difficile Not amenable to computer analysis
Candida spp.
PFGE Enterobacteriaceae Fewer bands
Staphylococci Amenable to computer analysis
Enterococci Very broad application.
Candida spp.
Genome restriction fragment length polymorphism analysis: ribotyping,
insertion sequence probe fingerprinting Enterobacteriaceae Fewer
bands
Staphylococci Computer analysis
Pseudomonas aeruginosa Sequence-based profiles
Mycobacterium tuberculosis Automated
Candida spp.
PCR-based methods: repetitive elements PCR spacer typing, selective
amplification of genome restriction fragments, multilocus allelic
sequence-based typing Enterobacteriaceae Crude extracts and small
amounts of DNA may suffice
Acinetobacter spp.
Staphylococci
M. tuberculosis
HCV
Library probe genotypic hybridization schemes: multilocus probe dot-
blot patterns, high-density oligonucleotide patterns Burkholderia
cepacia Unambiguous yes-no result
S. aureus Less discrimination than other methods
M. tuberculosis Couple with DNA chip technology
a The table contains examples of available methods and applications
and is not intended to be all-inclusive.
b Adapted from Pfaller[2].
Table 5. Reduction in number and cost of nosocomial infections
through collaborative efforts of infection control, clinical
microbiology, and molecular typing laboratoriesa
Time period Nosocomial infection rate (%)b Reduction in total
infections (no.) Reduction in cost
(million $)
94 vs. 95 94 vs. 96 94 vs. 95 94 vs. 96
FY 1993 3.3
FY 1994 3.4
FY 1995 2.6 301 1.8
FY 1996 2.6 344 2.6
aAdapted from Hacek et al.([10].
bPercentage of patients with nosocomial infections

Re: Veldanda Swapna-regarding tests

2008-06-25 12:39:00

Hello,
I can understand the difficulty when all the tests come back normal.
This happened to my daughter (aged 16) but we have continued to
perservere with the dietry regine (basically gluten and lactose
free), vitmain suppliments and magnet therapy for pain control. We
know it helps as we have tried coming off one or another or in
combination and the problems are back, usually with vengence.
Although the (British) doctors are still quite sceptical, especially
when all tests including ones for gluten and lactose come back
normal, there is little to back up and support our claims.
But as we all are aware, these problems are real and are there
whether test result show or otherwise.
June
Cambridgeshire
UK

Re: Calling all NIDS parents UK

2008-06-25 10:06:49

Hello,
Sorry about the half message earlier on. Fat clumsy fingers!
Anyway, I hope to make contact with as many NIDs parents/sufferers in
the UK as possible. My email address is junecnicholls@... or
phone on (01832) 270 080 or fax on (01832) 275 994

San Antonio - videotapes

2008-06-25 05:47:03

Dear all,
I am Lenny, mother of autistic child, Kevin (6 yrs)
who is the patient of Dr. Goldbrg since October last
year.
We live in Indonesia and really want to have the
videotape of Dr. Goldberg's presentation in San
Antonio to be able to share it with other parents in
Indonesia.
Could anyone help me?
Thanks & best regards,
Lenny (Kevin's mother)

Fw: This is no joke - VERY SERIOUS- we had it too.

2008-06-25 01:09:58

Since I already helped spread one virus already (Badtrans...) I felt it
better to warn people about this one. It may have become attached to an
e-mail I sent out to the group. I really don't know how all this stuff
works - but this virus is on my computer and I have no idea where it came
from - just be cautious and check it out. It will take about three minutes
and may save you a lot of headache later --
Jill Fenech

Re: Business Plan Release??

2008-06-24 18:39:48

Hi there everyone. We had our telephone consult with Dr. G this past
Thursday and he informed us that the business plan was set to be released to
a select few individuals for the coming weekend. Does anyone know if this
went forward???
Jill

Secretin Controlled Trial Results (Journal of Pediatrics, May 2001)

2008-06-24 11:41:06

The following was posted to me:
Repeated Doses of Porcine Secretin in the Treatment of Autism: A Randomized,
Placebo-Controlled Trial.
Pediatrics 2001 May;107(5):E71
Roberts W, Weaver L, Brian J, Bryson S, Emelianova S, Griffiths AM,
MacKinnon B,
Yim C, Wolpin J, Koren G.
Autism Research Unit, Child Development Centre.
Background and Objectives. Anecdotal reports on the efficacy of secretin in
autism raised great hopes for the treatment of children with this disorder.
Initial single-dose, randomized, controlled trials failed to demonstrate any
therapeutic effects of secretin. The present study is the first to test the
outcome of repeated doses and to examine whether there is a subgroup of
children
who are more likely to achieve positive effects. Method. Sixty-four children
with autism (ages 2-7 years; 55 boys and 9 girls) with a range of
intelligence
quotient and verbal ability were randomly assigned, in a double-blind
manner, to
secretin or placebo groups. Children received 2 doses of placebo or porcine
secretin, 6 weeks apart. Assessments were performed at baseline and 3 weeks
after each injection using several outcome measures. Results. There were no
group differences on formal measures of language, cognition, or autistic
symptomatology. Subgroupings based on cognitive level, the presence or
absence
of diarrhea, or a history of regression failed to show any significant
therapeutic effects of secretin. Conclusion. No evidence is provided for the
efficacy of repeated doses of porcine secretin in the treatment of children
with
autism. The possible relationship between relief of biological symptoms and
enhanced skill performance is discussed.
PMID: 11331721 [PubMed - as supplied by publisher]
Regards, Sharrill Hemry

Re: [NIDS] TF

2008-06-23 23:13:31

Where on his website is the TF info? I've been looking but can't find it.
Thanks
Mary
In a message dated 5/27/2001 6:08:35 PM Eastern Daylight Time,
Sroelike@... writes:
<<
Dr Goldberg has alot of information on TF on his website. If you go into
the conference area and search on Transfer factor, there are 17 messages. I
would read what he has to say about it.
Good luck and God bless.
Suzanne

Re: [NIDS] Natural Killer Cells-and Transfer Factor

2008-06-23 22:49:14

My son is a patient of Dr. G's. When we started with Dr Goldberg, my son was
on Transfer Factor and we did see improvement. Actually, when we tried to
remove the Transfer Factor, on Dr G's advise, my husband and I, and my son's
teachers (who didn't know we made a change) saw a notable regression. We put
him back on the Transfer Factor until my son started kutapressin. The
kutapressin seemed to take the place of the Transfer Factor and then some.
For us, the kutapressin is a better choice.
Once we started the kutapressin, my son's symptoms were similar to when he
got too much Transfer Factor. Instead of stopping the kutapressin, we
removed the TF and ended up in a better place. I have suspicions that the TF
and kutapressin may push similar buttons, but, as Kathy said, I really don't
know how the TF works.
Dr G was good about working with us during the time my son was on the TF, but
he has said that he is glad that my son is off it now. I'm thankful to have
Dr G working with my son. We have really seen some nice changes. I'm
especially thankful that Dr. G is such a "stickler" on safety. I want to
help my son's "autistic" behaviors decrease, but I don't want to hurt his
health in the process.
Just my experience,
Sharon

[NIDS] NK cells

2008-06-23 15:55:54

In a message dated 5/26/01 9:15:48 AM Central Daylight Time, JOSKAT95@...
writes:
I am wondering about allergy shots. Has anyone gotten their child allergy
shots and has it helped your child's autism symptoms? We have an air filter
for my son's room, but while it helps some, it does not elliminate the
problem. My son is extremely allergic to dust mites. At this time, we live
in an apartment and can not just rip out the carpet. I do not have curtains
on windows.
Thanks,
Tracy in TX

Re: [NIDS] NK cells

2008-06-23 05:06:01

Eric,
I think that it is great that you think that the supplements that you have
given your children have improved their health. Unfortunately personal
impressions do not make a scientific study. Not only do we not know what
these products do to normal healthy individuals but we don't know what they
do to someone with an abnormal immune system. The immune system is constantly
being bombarded and reacting. It seems to me that a lot of time is spent on
this list is spent on talking about what to give a child with an already
overburdened immune system instead of what you could be doing to lighten the
load of that immune system. It may be that money spent on supplements would
be better spent on an air filter for a child's bedroom. Kathy R NIDS-Northern
New York

NK cells

2008-06-23 03:19:15

When I used to sell Mannatech products, they had a study that showed their
product Ambrotose (which was in practically everything they sold) had
increased the NK cell level in even "healthy" people. While I am no longer
selling the stuff { unless everyone starts to want to buy it from me again
:-) } my kids still do eat the PhytoBears and for the 3rd year in a row since
on the products they only got very mild colds this winter. I do believe this
Ambrotose stuff has some merit in increasing the NK cell level....
Eric

Re-Natural Killer Cells-we don't have many at all!!

2008-06-23 00:49:14

Unfortunately the low natural killer cells can be a big part of the immune
dysregulation. That is part of the reason our kids end up with these
chronic smouldering infections. Interferon is part of what is causing the
brain dysfunction. If you look at the explanation for interferon, it should
increase the NK cells. With the dysfunctional immune system that is not
happening. That is why we need to expedite the NIDS research and gain
access to the immune modulators. We don't want anything that either
stimulates or suppresses the immune system. We need something that will
balance and normalize it.
Cheryl
interferon-alpha
<chemical
peripheral blood leukocytes or lymphoblastoid cells when exposed to live or
inactivated virus, double-stranded RNA, or bacterial products. It is the
major interferon produced by virus-induced leukocyte cultures and, in
addition to its pronounced antiviral activity, causes activation of nk
cells.

Re: [NIDS] Natural Killer Cells-we don't have many at all!!

2008-06-22 13:08:33

Hey Kathy B. in Chicago,
I'm not sure what Dr. G. does for that, but my daughter and i have horrible
immune systems and we both take Kutapressin injections and she takes gamma
globulin injections IM. That works well for us.
Tina
Tina M. Hendrix
CureNIDS2000@...
President, NIDS Coalition, Northern California
Neuro-Immune Dysfunction Syndromes
Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,
etc.

Natural Killer Cells-we don't have many at all!!

2008-06-22 08:42:38

Hi!!
We just had our repeat bloodwork back from Dr. G after a year of treatment
and we had some good news and bad news. The good news is that our
alpha-inferon came down from 197 to 72. Is alpha-interferon a measure of
inflammation, infection or for the immune system in general? That was the
good news. The bad news is that we have almost no natural T killer cells at
all. Does anyone know what Dr. G does for this? I was completely floored
and am now completely convinced of my son's horrible immune system. Please
help!! Thanks!! Kathy B ( In Chicago)

Nice example of the type of meds(immune modulators) we hope to have for NIDS

2008-06-22 02:04:36

Experimental Arthritis Prevented by Treatment With Neuropeptide

Re: [NIDS] Veldanda Swapna-regarding tests

2008-06-21 21:05:58

Cheryl,
I could not agree with you more! Kathy NIDS-Northern New York

Article about Viral Infection and development of MS

2008-06-21 14:39:02

Viral Infection in Youth Appears to Prime CNS for Later Development of MS

Veldanda Swapna-regarding tests

2008-06-21 03:06:37

Hi,
I'm not sure exactly what tests you have already had done. The ones that we
do are available on Dr. Goldbergs website. To really help a child you need
to address all the things that help keep their immune systems activated. If
you need articles to help validate all of this to your physician, I'll put
some links below for you.
I hope you are able to get some answers and help your son. If he has
responded to a diet change then I think that tells you it is a treatable.
If he had some type of permanent disorder... then diet would not make any
difference. It's only one piece of the problem, but it's a start.
Hopefully with labwork you will be able to determine whether there are viral
and other things that need to be addressed.
When your child begins to improve you will sometimes find it hard to
believe.
Good Luck
Cheryl
P.S. If you have questions you would like to ask Dr. Goldberg, he has an ask
the doctor section in his conference area.
http://www.neuroimmunedr.com/Conference/conference.html
labtests
http://www.neuroimmunedr.com/NIDS/Proposed_Work-Up_NIDS/proposed_work-up_nids.ht\
ml
this has info for doctors and the NIDS hypothethis
http://www.nids.net/doctors.htm
Dr. Goldbergs testimony
http://www.house.gov/reform/hearings/healthcare/00.06.04/goldberg.htm
Goldberg, M. Frontal and Temporal Lobe Dysfunction in autism and Other
Related Disorders: ADHD and OCD. Alasbimn Journal1(4): July 1999.
http://www.alasbimnjournal.cl/revistas/4/goldberg.htm

Re: [NIDS] Mass. area NIDS doc

2008-06-20 22:52:23

Thanks Cyndy for the plug! Yes, there will be a NIDS clinic in Northern New
York in the near future! Kathy R NIDS-Northern New York

NIDS blloodwork

2008-06-20 19:07:26

I'm so proud of my 4 year old little boy. I finally took him in for
the NIDS bloodwork and he did so well. At first he started to squirm
and kind of kick the nurse but then I started to sing his favorite
song to him (very quietly in his ear) and he calmed right down! They
were able to take 12 vials of blood at one time. The Emla cream
worked wonderfully. I was so relieved to finally have it overwith
when I got a call from the lab today. They said that one of the
vials (for the lead level) did not have enought blood in it so I need
to take him back one more time to get another vial! Argh! This
makes me rather upset since I went to so much work to make sure they
didn't have to stick him more than once. However, I know they tried
to get as much blood as possible...Well, it will be off to the lab
for another blood draw. At least I know he can handle it. I'll
keep everyone informed!

Re: [NIDS] Maryland pediatricians

2008-06-20 16:18:43

I live in the Baltimore area too, but can't help you...sorry. I'm a special
ed. teacher and got involved in all of this because of that and the fact
that I have a foster son who has autistic-like tendencies as a result of
malaria when he was 4. Anyhow, just wanted to welcome you to the area. I
will ask around and see if i can be more helpful.
Eileen
From: Michelle M Pappadia <pappadia@...

Re: [NIDS] ABA site

2008-06-20 05:50:30

Here is a good one:
http://www.behavioranalysts.com/
Tina M. Hendrix
CureNIDS2000@...
President, NIDS Coalition, Northern California
Neuro-Immune Dysfunction Syndromes
Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,
etc.

Re: [NIDS] Need cases to present to doctors

2008-06-20 05:08:59

hello
this is fine that u r asking for cases.
I am writing abt my kid:
he is 3 years old now and found to be autistic just
two months back.
he undergone keroytyping and all bloodtersts and
everything is normal.
we started gfcf diet.
he is not hyperactive. having good eyecontact and
resonsiveness.
please do suggest us some intervention programs
thanking you,
swapna.v

Re: [NIDS] Illinois meeting

2008-06-19 16:52:01

Michelle,
The meeting was great for us, really made us feel more secure that we were doing
the right thing. We would love to meet again. Kathy P.

Some behavior links

2008-06-19 14:45:10

www.behavior.org
www.feat.org
www.feator.org
are a good start.
www.difflearn.com for books and videos on ABA. The computer CD Autism
Academy is a good training tool to learn how to do discrete Trials and can
be ordered here or at www.eden2.org
There are numerous program providers and there are many ABA based schools.
Good luck
--Rose

ABA in Wisconsin

2008-06-19 03:42:36

I know I promised this info to someone on this list. Sorry it has taken
me so long to post! (Digging through the mounds of paperwork I've
collected did take some time, though.....excuses, excuses) It's called
Wisconsin Early Autism Project, Inc. There are clinics in Madison
(608-288-9040), Milwaukee (414-479-9798) and Green Bay(920-338-1610). I
believe as a resident, ABA is paid for. If you are interested in more
info, email me personally.
Michelle
pappadia@...

Maryland pediatricians

2008-06-19 01:51:14

Does anyone happen to know any pediatricians who are familiar with Dr.
Goldberg in the Baltimore area? Looks like we will be moving to Ellicott
City in a few months. We've found an OT, PT and speech therapist. Next
on the list is a decent doctor. Please help! Knowing I would not have
to convince another doctor of how great Dr. G is would make this move
much easier. Thanks!!!
Michelle

share your resources with new autism Web site

2008-06-19 00:05:35

Hi, I'm a mom of a 3 1/2-year-old boy recently diagnosed as PDD-NOS
and SID. I'm creating a Web site to share resources about the autism
spectrum disorders. Check it out at http://www.asdcentral.org and
share your resources with me and the autism community.
Janet Kalbhen

Re: [NIDS] Digest Number 765

2008-06-18 19:30:09

I found the studies reported by the M.I.N.D. institute and othere
frustrating, because they do not focus on rehabilitative or corrective
therapy for our children , just diagnostic---
No matter how effective we are in identifying children at risk, if we don't
have adequate meds to correct the dysfunction, what have we really gained?
kate

Need cases to present to doctors

2008-06-18 08:35:15

I live in Spain and I'm trying to convince doctors here on NIDS. I need
cases, like what Marcia Hinds sent not to long ago. The tougher the case
the better, but that does not mean I want easier cases. If possible in the
following way:
1. What it was is like before the protocol.
2. Methods used before (GF/CF diet, medication used, etc.)
3. The process.
4. The results.
5. What is life like now.
I know this may be asking for alot, but we have to get NIDS here in Europe.
It is an epidemic here too. In spain we went from 1 in 10000, to, 15 in
10000.
Thank you all for your time and hope to hear from you soon,
Regards,
Chris Denton

RE: [NIDS] Dr. Goldbergs website

2008-06-17 23:21:05

Yes and his e'mail has kicked back "undeliverable" messages too during the
weekend.
RW

Dr. Goldbergs website

2008-06-17 16:42:33

I have not been able to access Dr. G.'s website for several days now. Has
anyone else had this problem?
Thanks,
Tracy

can't make Illinois meeting

2008-06-17 16:01:15

HI. John and I were really hoping to be at the meeting tomorrow in Elgin.
However, we won't make it. With Mother's Day, softball, and a Fastforward
meeting, it just isn't going to happen for us. Please keep us posted and let us
know when the next meeting is. Thanks! -Noelle

Re: [NIDS] Insurance and ABA

2008-06-17 06:18:10

Hi,
We are just switching insurance to Blue Cross. What plan do you have? How
did you get them to cover it. We are also running a home program. Please
let me know, thanks!! Kathy

Re: [NIDS] ‘Klebsiella Pneumonia’ – pathogenic bacteria.

2008-06-16 23:56:38

Hi!
My son also had the same bacteria in his stool elevated 3 plus. If you want,
please e-mail me privately!! Thanks KathyB

Re: [NIDS] ELYSE GOLDBERG RECOVERY STATUS

2008-06-16 16:08:46

thank you for keeping us up to date!

New Book on Autism, Asperger's, and PDD

2008-06-16 12:52:30

*
from the book..........

ELYSE GOLDBERG RECOVERY STATUS

2008-06-16 11:02:26

Elyse Goldberg (spouse of Dr. Michael Goldberg) had bi-lateral mastectomies on
Tuesday, 1 May. She was moved from the hospital to a special care facility on
Saturday, 5 May. Apparently, Elyse's healing from the surgery is going
exceptionally well and her surgeon thinks she is his star patient. Elyse has an
incredibly upbeat attitude about the surgery and aftermath and Dr. Goldberg is
in good spirits. Elyse still has a lot of medical appointments ahead of her in
the coming months, so I'm sure both Goldbergs could use our continued support
and good thoughts.
Sharrill Hemry

Insurance and ABA

2008-06-16 07:21:44

We have a two year old with autism and he has made huge progress in the past 12
weeks with ABA. This is a little off topic, but we do ABA in our home about 37
hours a week using Speech/Language pathologists and Occupational Therapists and
Blue Cross/Blue Shield pays for all of it. It is the first time in the NW that
they have covered this type of program, so they ask for progress reports each
month. He has significant ups and downs that we all believe have a biophysical
basis. I believe in NIDS, but I have not found a doctor here locally that will
support me. If there is anyone on the list in Montana, please email me with info
on your doctor at skyfam@... .
Thanks,
Tara Norick in Columbia Falls, Montana

‘Klebsiella Pneumonia’ – pathogenic bacteria.

2008-06-15 23:56:58

I am parent of 3.5 years old who has been diagnosed with autism. My
son's CSDT test revealed that he has elevated levels of `Klebsiella
Pneumonia' pathogenic bacteria.
We will appreciate your guidance on link between autism
and `Klebsiella Pneumonia' pathogenic bacteria.
Has any one has any suggestions and possible treatments for the same.

NIDS video tape and PSA

2008-06-15 13:17:23

2 items for those interested in NIDS (neuro-immune dysfunction syndrome)
1 - There is a set of 3 video tapes available from Convention Coordinators
from the 2nd Annual State (TX) Medical Conference on Autism: Feb 24, 2001
Cost is $40.00 We just finished viewing Dr Goldberg's presentation.
Can't get an appt to see Dr Goldberg ? Interested in what NIDS is ?
I highly recommend getting these tapes. Go in with a couple of families
and have a 'showing'. $40.00 split between a few families won't
empty your pockets :o). Dr Goldberg gives a very good presentation, which
includes NeuroSPECT findings and medical items on a variety of topics
of interest to the autism commmunity.
The telephone number is under the his website at:
http://www.neuroimmunedr.com
or you can just mail a check for $40.00 to
Convention Coordinators
8620 N. New Braunfels #519
San Antonio, TX 78217
2 - I understand the PSA (public service announcement)
for NIDS can be downloaded from the NIDS website
http://nids.net
linda/maureen: you may notice a familiar looking redhead :o)
He needed a haircut bad that day ......
Enjoy!
Doris

Re: [NIDS] Kathy..I am located...

2008-06-15 12:59:00

Hi, Well you are north of New York City! We are in Jefferson County which is
24 miles south of the Canadian Border. If you are interested in a NIDS clinic
my number is 315-773-6135. We will be slowly starting in June if all of the
NYS paperwork is done! Kathy

Re: [NIDS] New Nids Site

2008-06-15 07:57:46

I couldn't view the PSA.....How do you get it to run?
Sharon

New Nids Site

2008-06-15 01:16:23

Take a look at the latest upgrade to the NIDS site if you haven't seen it -
its great. Down load the PSA and send it out to the world!!
Thanks Marcia for pointing this out.
RW

Kathy..I am located...

2008-06-14 18:47:42

Hi Kathy, I live upstate NY, Orange County..Are u familiar??I would be
willing to travel though..My Dan doc is in Long Island..Jeanine(Daniels mom)

Re: [NIDS] Meeting in Illinois

2008-06-14 07:15:52

Hi Michelle,
Just letting you know we will be there!! Thanks so much for pulling it
together! Liam and Kathy Buckley

Silver Handles e'mail

2008-06-13 23:21:12

Dear Listmembers,
Apologies if you received a strange email yesterday - which looked like an
inventory - well it was. Somehow, a virus got in and sent this one out to
the NIDS group and my sister in-law - from where it came.
Usually, once I download, I disconnect the phone line - very fortunate
because later, I discovered the entire contents of my e'mail system sitting
in the outbox - all 2,143 e'mails - addressed to one person!!. I deleted the
lot, shut down the system and ran my virus check again - now I have it
switched on permanently for incoming mail. I have heard of this happening
once before to someone, so once again apologies, and if anyone received
anything else from me not related to NIDS destroy the email and then let me
know,
Regards
Robert

ADDHelpline May Newsletter

2008-06-13 18:09:23

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Re: [NIDS] Fast Forward

2008-06-13 17:24:32

I did not try FAST FORWARD, but instead bought EAROBICS (I think this company
completely ripped off FAST FORWARD and made an extremely similar CD). The CD
was about $40 or $50 bucks and very good. They also make an EAROBICS II for the
next step. I don't think it would hurt to try this and you may find someone
near you willing to share if they have. You never know, but it is sure a lot
cheaper than FAST FORWARD and you get to keep the CD!! Good luck.
Ginger

ELYSE GOLDBERG SURGERY

2008-06-13 03:07:50

I somehow managed to mess up my access to the NIDS list within the past 24 hours
and did not receive today's NIDS digest. Because of this, I do not know what
has been posted on the list within the past day, so I am forwarding the
following just in case:
Elyse Goldberg, Dr. Michael Goldberg's wife, underwent bi-lateral mastectomies
earlier today. She came out of the surgery and is doing fine, however she still
has much work ahead.
I had been asked by several people how to send flowers to her. When Elyse was
asked about this prior to her surgery, she immediately stated that she would
rather the money be spent as a donation to NIDS, a cause that is very dear to
her heart.
For any who wish to make a donation in honor of Elyse at this time, checks can
be made out to "NIDS" and mailed to: NIDS, c/o Dr. Michael J. Goldberg, Suite
318, Wilbur Medical Plaza, 5620 Wilbur Avenue, Tarzana, CA 91356
Elyse sent out a "Thank you" e-mail which I know she planned to post on the NIDS
List (but since I can't access the list right now, I don't know if it actually
posted, so I'm resending it here). Sorry if this is duplicative.
Sharrill Hemry
From Elyse Goldberg:
Most of you know I am having bi-lateral mastectomies tomorrow (Tue.)
Where I have not had the time to thank you individually I can not tell you
how much I appreciate all the cards and letters and pictures of the children
that have been sent. You know who you are and I won't embarrass anyone with
extra thanks . Because of the work with your children over the last years
many of my friends never understood why I did not have time for them. I can
not tell you enough that the cards, prays and well wishes and especially
seeing pictures of some of your children that I have not seen in a while
tells me what I have given up has been more than worth it!
Thanks for all the support. And for all of the support you have shone my
husband ( Dr. G) it is a really a tough time for him.
Please hug the kids for me
Elyse Goldberg

Meeting in Illinois

2008-06-12 20:43:07

TO ALL INTERESTED:
WHEN: May 12, 2001
TIME: 2-4pm
WHERE: Judson College - Eagle Lounge, first floor of the Lindner Center
(formerly the Ramada Inn) on the southeast corner of Rte 31 and I-90 in
Elgin
RSVP: pappadia@... or 815-356-6192
We were thinking this first meeting could be for Goldbergians and then
having another meeting later in the spring to invite others who are
interested in getting to know more about Dr. Goldberg. Suggestions,
comments and ideas are always welcome so if you want to pass them along
feel free! Looking forward to meeting all of you!
Michelle Pappadia

sterling silver handles1

2008-06-12 15:49:24

Pink ribbon (Nanas)1 x glass ball with stalagmites (Nanas)1 x wooden
crocodile1 x black Walt Disney animal ornament (Stefanie)1 x handmade pint
pottery heart (Nanas)1 x Limited edition pottery/porcelain bird - brown sparrow
type bird with pink flower on a white round base1 x White china rabbit
sitting on a ball (German) (Stefanie)BOX NO. 4 (Fragile)2 x small silver plated
serving plate with engraved boarders1 x oval serving platter (silver plated)
(modern style)2 x small sterling silver sauce boats with wooden handles2 x small
sterling silver sauce boat plates (round)1 x silver rimmed cheese plate and
cheese knife1 x silver round bowl1 x sterling silver round bowl with engraved
boarder1 x silver small bowl (Paul Revere design)2 x sterling silver cigarette
holders CWC and LAC1 x silver plated cream/milk pitcher (1/2 pint)4 x pieces
of salt & pepper shakers (sterling silver) (2 salt & 2 pepper)1 x silver coaster
holder (made in England)1 silver sugar bowl1 x cryst!
al jam pot with silver lid & silver spoon1 x bone china Ireland Beleak sugar
bowl1 x bone china Ireland Beleak cream pitcherBOX NO.

Thank you

2008-06-12 09:20:38

Most of you know I am having bi-lateral mastectomies tomorrow
(Tue.) Where I have not had the time to thank you individually I can
not tell you how much I appreciate all the cards and letters and
pictures of the children that have been sent. You know who you are
and I won't embarrass anyone with extra thanks Because of the work
with your children over the last years many of my friends never
understood why I did not have time for them I can not tell you
enough that the cards, prays and well wishes and especially seeing
pictures of some of your children that I have not seen in a while
tells me what I have given up has been more than worth it!
Thanks for all the support And for all of the support you have shone
my husband ( Dr. G) it is a really a tough time for him.
Please hug the kids for me
Elyse Goldberg

RE: [NIDS] Thank you

2008-06-12 08:34:41

Elyse...
Please look into the "Iridodial" (ant extract from Germany as discussed by
Dr. Nieper in the book "The Curious Man", The Life & Works of Dr. Hans
Nieper). It has been available in the U. S. through Nutrient Carriers,
Santa Teresa, NM under the Advanced Research Label for one or two months.
Dr. Haltiwanger, an M.D. from Germany who practiced with Dr. Nieper for
several years, is now on Staff at Nutrient Carriers. I am sure your husband
is aware of it's current availability and it's effectiveness with breast
cancer, but I just had to make sure.
God Bless You!
Pat

Re: [NIDS] clinic in NY

2008-06-12 04:56:17

Michelle,
This is an addendum to the first letter that I sent in reply to your
inquiries. Northern New York 24 miles from Canada. Kathy NIDS Very Northern
New York

blood tests/immunology

2008-06-11 15:55:57

Thank you all Kathy''s who are using identifiers such as their last initial.
I appreciate it! Kathy NIDS Northern New York

blood tests/immunology

2008-06-11 11:35:11

There is an old saying that goes;" anyone who treats himself or his own
family has a fool for his physician." You should ask questions of your
healthcare providers continuously and keep a dialog going. We are, after all,
partners in health care. Kathy NIDS NNY.

Fast Forward

2008-06-11 06:02:35

Hi,
I am looking for information about Fast Forward. I would especially like to
hear from anyone who has tried it with their child. Any success stories or
disappointments? My son is six-years-old and is labeled as severe autism.
We live in the North Dallas area. Please email me privately as I currently
am signed up to read only at the website on several lists. Thanks very
much!!!!
Tracy
whcmccain@...

Re: [NIDS] Vandenberg AFB info

2008-06-10 22:14:39

Hi Sharon,
I just wanted to say hi and good luck with your potential move. We took
Colin off the Prozac and he is now on Paxil. We'll see what happens. I wish
I could help you with info, doesn't look like you will be coming to the
Chicago area!!! Let's stay in touch! Kathy B

Re: [NIDS] Digest Number 751

2008-06-10 16:10:57

Hi At the risk of sounding ignorant, could someone
please tell me what CARD is? A lot of people have been
talking about it so I feel out of the loop. Thanks,
Kathy G

Vandenberg AFB info

2008-06-10 14:07:38

Does anyone have any experience with services available around Vandenberg AFB
(Lompoc School District), CA?
Thanks,
Sharon
ApplPckr42@...

RE: [NIDS] AB 88

2008-06-10 05:06:18

Becky,
This is current law; it is in effect as of July 1, 2000. It is for all
insurance contracts which renewed on or after that date. Requires a
diagnosis of autism.
I found a link to a page that shows status of similar legislation, by state:
http://www.nami.org/update/sparity.html
Vicki

AB 88

2008-06-09 23:13:14

Vicki
This is just a bill, or is it a law? You wrote "bill" , but I am just double
checking! I think if this is in current legislation, California residents
should be putting pressure on their assemblymen/women.
I am currently in Washington state. I wonder if there is such a measure here?
Incidentally, anyone else on the NIDS list in Washington state? Becky

Re: [NIDS] I canceled the cortizone shot...Thanks

2008-06-09 15:21:26

Jeanine, Yes! See Dr. Goldberg as soon as you can. Bowel problems are most
definitely a part of the problem with NIDS. Our son's GI problems are not
entirely cleared up yet but are 1000% better once we started Nizoral (for
yeast) and the CF/GF diet. We're actually trying to correct a bit of
constipation now. Not all kids are the same, however, and that's why I think
it's so important to see Dr. G. I wouldn't advise doing anything
piecemeal--labwork is the best indicator of the specific problems affecting
your child. Incidentally, I don't want to berate all GI specialists. We
took our son to one a few years ago. Besides referring to our son as
"tragic" while he was in the room, he also made us feel as if we were jumping
on the latest secretin bandwagon (which we weren't) and talked about all the
"charletans" trying to make a buck off of desperate parents. It was a waste
of our time. But, as long as you're prepared for that possiblity, a consult
doesn't hurt. Just make sure they have darn good reasons for any testing!
Hope this helps. Linda

Getting the medicine down

2008-06-09 13:37:22

When my child was young, getting the medicine down was one of my most
difficult tasks. It was much easier after I discovered what worked
for us. We cut pills into an easy swallowing size and then put them
on a spoon surrounded by Mocha Mix non-dairy ice cream. I would give
my child the spoon of ice cream followed by a water chaser. After a
few years he learned to take pills and no longer needed the Mocha
Mix. Hope this helps!
Marcia

Re: verbal behavior therapy

2008-06-09 09:51:19

I know a little about this because we incorporated
the method into our Lovaas Based ABA therapy.
It did wonders for wh disrimination.
The basic terminology for parents to learn:
1. Verbal behavior is based on the works of
Skinner's functional ANalysis of Verbal behavior and is very much ABA.
2. DTT-NET (discrete trial training which is what
we use in Lovaas) and Natural Environment Training
are the code words in VB.
3. Partington and Sundberg are very good behaviorists
who wrote: teaching language to children with autism
and the ABBLS assessment for children with autism
and other related disorders. This ABBLS guide is
the ONLY test I believe that thoroughly tells you
what skills you need to work on with your ASD
child. (strong statement I know but this is what
schools should be using to write IEP goals. It is
based ont he progression of learning and not what
"a 4 year old oughta know, etc. )
4. Carbone and McGreevy are two behaviorists
who use VB methods and hold workshops which