All parents who have children with autism have asked questions such as, "Why
our child?" and "Is it some thing or things we did or didn't
do that caused our child's autism?" It is inevitable for parents
with a history of Lyme disease or Lyme-related infections to wonder if Lyme
infections could be related to their children's autism and autism-related
For the co-founders of Lyme Induced Autism (LIA) Foundation, Tami Duncan and
Kathy Blanco, both mothers with Lyme disease and with children on the autism
spectrum, the questions were obvious. The answers have been more elusive, especially
because of the lack of clinical research combining knowledge in these two areas.
These women share the concerns of many parents who ask why so few physicians
and researchers do not consider chronic Borreliosis as an inciting or contributing
factor in autism. That was their purpose in starting the LIA Foundation, an
organization that focuses on the possible connections of Lyme in autism.
It was LIA's goal to bring together parents, physicians, and researchers,
all with diverse backgrounds and experiences, around one table at a "think
tank" to share their knowledge and begin the process of choosing optimal
methods for testing and treating this complex illness in the sensitive and
often impaired immune systems of autistic children. Another major goal was
to have both clinicians experienced in treating Lyme disease and/or those experienced
in treating autism share ideas. Therefore, Lyme Literate Medical Doctor (LLMD)
and Defeat Autism Now! (DAN) practitioners were invited from all over the country
to take part in the first LIA Foundation Think Tank, which took place on January
27 and 28, 2007 in San Diego .
The LIA Foundation was represented by the following:
Tami Duncan – President and Co-founder
Kathy Blanco – Vice-President and Co-founder
Antoinette Grewal – Executive Board Member
Practitioners and researchers included the following:
John L.Kucera, MD – Family and Holistic Medicine, DAN! Practitioner
Warren Levin, MD – Integrative Complimentary Medicine, LLMD,
DAN! Practitioner (VA)
Nicola McFazdean, ND – Naturopath, DAN! Practitioner (CA)
Garth L. Nicolson, PhD – Chief Science Officer, Institute of
Molecular Medicine (CA)
Geoffrey Radoff, MD – Homeopathic Medicine, DAN! Practitioner
(CA and AZ)
Joyatsna Shah, PhD, CCLD, MBA – Igenex Reference Laboratory (CA)
Anthony R.Torres, MD – Clinical Researcher, Utah State University
D. Tobin Watkinson, DC – Homeopathy, Electro-medicine, Complex
Kurt N. Woeller, DO – Integrative Medicine, DAN! Practitioner
Jeff Wulfman, MD – LLMD, DAN! Practitioner (VT)
Therese H. Yang, MD – Family Medicine, LLMD (CA)
Also contributing were Bob Sands of San Diego Hyperbaric; Carline
Banks, patient liaison working with Dr. Radoff; and, finally, Troy
Duncan, representing spouses of those with Lyme disease and fathers
of children with autism.
Tami Duncan began with a review of the mission and activities of LIA
Foundation. Each activity contributes to one of three goals: Awareness,
Education, and Research. Tami also discussed plans for future programs
and the critical need for funding, especially for additional research.
Kathy Blanco discussed the current situation in the autism medical
community and the possible reasons why most physicians do not consider
or are not aware of chronic Borreliosis as an inciting or contributing
factor in autism. She emphasized that infection-based causality and
co-factors need to be explored in more detail. Examples of possible
commonalties of Lyme disease and Autism Spectrum Disorder (ASD) were
presented (e.g., genetic patterns: HLA-D4 more common in both). Since
children with health problems related to these two issues are often
very ill, she is particularly concerned with helping the entire medical
community see the importance of further study and treatments for Lyme-Autism
Dr. Jeff Wulfman treats Lyme disease in
his practice and provided a well-reasoned summary of this complex
and controversial topic. As
with other similar organisms, it is very likely that B. burgdorferi
and other Borrelia species are transmitted by other non-tick and non-insect
vectors, including sexually, or from mother to baby, and even between
siblings. It is now clear that Lyme-related illness exists throughout
the US in significant numbers, especially in the Northwest, but is
often unrecognized. Lyme-related illness is appropriately divided into
three general categories: acute Lyme, "chronic" Lyme/Borreliosis,
and "Borrelia-related Complex." Acute Lyme, identified
and appropriately treated early in an immunocompetent person, usually
responds well to short-term antibiotics, but may recur or progress.
Unfortunately, this is not the sub-group likely to be encountered in
children with ASD. Chronic Lyme/chronic Borreliosis is variably expressed,
depending on the immune condition of the host in which the Borrelia
is present and its response to the cumulative effects of numerous cofactors,
including coinfections, nutritional status, intestinal condition, other
environmental stressors such as heavy metals, pesticides, and other
toxins, mycotoxins, vaccines, and even psychological stressors. In
this category, the person may or not have symptoms of illness. Borrelia-related
Complex, like AIDS-related Complex, involves more severely immunocompromised
persons and has a unique presentation based on the multiplicity of
infections and related co-stressors. Effective treatment of these coinfections
and co-factors is likely to improve the therapeutic response to antibiotics
for the Borrelia organisms.
Dr. John Kucera gave a detailed presentation
of some of the current evaluations and care provided to children
with ASD by DAN! Practitioners.
He reviewed some basic and more advanced testing methods that provide
useful clinical data to guide the myriad of treatment options now being
used with increasing and sometimes dramatic effectiveness. He shared
the importance of "healing the gut" with special diets
and supplements, antibiotics and antifungals, probiotics, fatty acids,
and herbals. Children with ASD present with many gastrointestinal problems
including diarrhea and/or constipation, abdominal pain, anorexia, poor
appetite, and extremely limited food choices. The pathophysiology may
include increased intestinal permeability, lesions and/or lymphonodular
hyperplasia from the esophagus to the rectum, and inhibition of endopeptidase
enzymes (e.g., dipeptidyl peptidase-IV), needed for the digestion of
casein and gluten.
Dr. Kucera explained the importance of
identifying and safely removing toxins from the child's environment and body. Although mercury
is a serious and most significant problem in a child with ASD, more
than mercury must be considered. The concept of "synergistic
toxicity" was introduced, with the lethal combination of minimal
amounts of lead and mercury in rodent studies. Other toxic factors
include other heavy metals, solvents, cleaning agents, fragrances,
dyes, cosmetics, pesticides, petrochemicals, the waste products of
bacteria and molds, hormones and xenohormones, and even certain foods
or food components and additives. These, as well as antibiotics and
other pharmaceuticals, which have potentially limited benefits and
give relief of symptoms, must be considered carefully for their capacity
to negatively impact the neuroimmunoendocrine system of an ASD child.
The concept of "excitotoxins" was briefly reviewed. Protecting
the child from excessive oxidative activity is a critical step in recovery.
Detoxifying the child involves much more than controversial but often
beneficial techniques to remove heavy metals. The careful introduction
of various nutrients to recover, enhance, and coordinate hepatic detoxification
pathways provides long-term benefits in our polluted environment. Genomic
testing to identify potential limitations in detoxification pathways
such as methylation, glucuronidation, and glutathione conjugation is
Understanding and encouraging a healthy
relationship between providers of biomedical therapies and behavior
therapies is encouraged. A unique
strategy of tracking the success of biomedical treatments through sequential
documentation and rating of important facets of a child's life
by parents was introduced. Many applied behavior analysis (ABA) therapists
keep careful notes and tracking also, so that success of treatments
can be noted based on progress in behavior therapy.
Professor Garth Nicolson presented worrisome
but convincing evidence for the multiplicity of chronic coinfections
in ASD, including Chlamydia
pneumoniae, HHV-6 virus, and many Mycoplasma species. Military families
are particularly vulnerable due in part to the many transfers to various
locations where organisms have been found and perhaps to the many vaccines
they must receive for foreign travel. It is known that some vaccines
are contaminated with Mycoplasma species. It is also postulated that
the rapid reception of multiple vaccines, some of which contain small
amounts of thimerosal, a toxic preservative that converts to ethyl
mercury, is likely to have significant detrimental effects on the immune
system of a genetically vulnerable recipient. Military personnel have
found the Ixodes pacificus tick vector and isolated B. burgdorferi
on military bases on the West Coast and, by their own evaluations and
criteria, have designated these military facilities "high risk" locations
for risk of contracting Lyme disease.
Research of Gulf War Illness (GWI) has found a high incidence of
Mycoplasma infections, particularly the species M. fermentans, in
Gulf War veterans. This species is also found in very high percentages
of family members of Gulf War veterans with GWI, suggesting a probable
component of GWI to be via infectious transmission. In family members
of Mycoplasma-positive GWI patients, 53% developed similar signs
and symptoms and were diagnosed with Chronic Fatigue Syndrome and/or
Fibromyalgia. A high percentage of children born to a parent with
GWI have ASD. Professor Nicolson's newest study showed a dramatic
58% of these children with ASD studied have M. fermentans. There
are numerous transmission methods of Mycoplasma including bodily
fluids, tick bite, airborne, etc. His research also found significant
Borrelia species in these children. His suggested protocol for treatment
of Borrelia and Mycoplasma has been published and is available online
Dr. Joyatsna Shah from Igenex Laboratories discussed the problems
with current Lyme testing methods and CDC standards and gave her opinions
regarding ideal screening and confirmatory testing. She explained the
benefits of Fluorescence In-Situ Hybridization (FISH) technique using
ribosomal RNA of an organism that is very highly conserved. It is useful
for identification of Borrelia burgdorferi, which, like tuberculosis,
can hide from the immune system. FISH is also useful for potential
coinfections, Babesia and malaria. She discussed the importance of
the OspA (31kDA) antibody band and considers it the best marker for
the diagnosis of Lyme because of its high sensitivity and specificity
for Lyme. For better baseline screening, Dr. Shah recommends Immunofluorescence
antibody (IFA) tests along with Western Blot IgG and IgM. For follow-up
testing after treatment, she recommends a Lyme Dot-Blot Assay, using
three urine samples after antibiotic challenge and a Lyme PCR using
pooled urine samples. PCR on blood is useful only when Borrelia organisms
are actually in the blood. Confirmatory testing should be done after
a challenge with antibiotics, which may stimulate release of the Borrelia
from within tissues and intracellular locations.
Dr. Anthony ("Ron") Torres reviewed relevant concepts
in basic immunogenetics, including the difference between innate and
adaptive immunity, the significance of single nucleotide polymorphisms
(SNPs), and findings in histocompatibility (HLA) genes related to autism
(e.g., increased HLA-DR4 allele frequency, increased absence of C4B "null
allele" in ASD). He presented his research group's current
Lyme-Autism Project involving "Whole Genome Amplification." It
will utilize elegant and more accurate polymerase chain reaction (PCR)
amplification techniques, such as "nested PCR" and "Restriction
Digestion" after PCR, to increase specificity for particular
gene loci. They plan to use DNA from families with the autistic proband
for Borrelia burgdorferi and existing DNA from families with no ASD
for a control group. Using sophisticated statistical tools, they hope
to find significant areas of the genome for further study. Funding
for this important project is needed and is being sought by the LIA
Dr. Toby Watkinson works at the Scripps
Clinic, dealing with difficult cases involving chronic illnesses
and infections in immune-challenged
patients. He has had success combining aspects of homeopathy, acupuncture,
and "electro-medicine," helping the body "to unwind
the causal chain of illness to the basic common denominators." He
presented an innovative approach to testing and treating Lyme and Lyme-related
infections using the unique electrochemical "signatures" of
disease-causing organisms (similar to techniques used by Dr. Dietrich
Klinghardt). In the cases presented, elevated pre-treatment antibody
levels for viruses, bacteria, yeast, parasites, or physiologic proteins
(gliadin, transglutaminase) normalized as clinical symptoms improved.
Mr. Bob Sands of San Diego Hyperbarics
has extensive experience treating patients with Lyme disease and
autism with hyperbaric oxygen therapy
(HBOT). He reviewed some of the physiologic effects of this effective
approach and recommends a gradual increase in pressures from 1.2 to
2.2 ATA with 90-minute treatment sessions to achieve higher oxygen
saturations throughout the body for optimal results. The number of
sessions needed for each child depends on the child's initial condition
and response. Experience suggests that the use of antibiotics during
HBOT appears to increase therapeutic effects and clinical outcomes.
He reiterated that Borrelia, Bordatella, and Mycoplasma are considered "borderline" anaerobes
and thus are more susceptible in conditions of higher oxygen saturation.
Oxygen at higher pressures can be bacteriocidal and fungicidal. He
emphasized, however, that HBOT should be considered an "adjunct" therapy
and not a cure for Borrelia or autism.
Discussion on Lyme Testing Options
There were significant concerns among the think-tank participants regarding
the accuracy and flaws for Borrelia testing criteria. Information
provided to the LIA Foundation think-tank from Charles Ray Jones,
MD, LLMD, from New Haven, Connecticut is included among the following
facts and opinions: Lyme ELISA screening as recommended by the CDC
results in too many false negatives, up to 30% in Dr. Jones' practice
of more than 7000 children with Lyme disease. This lack of specificity
results in a significant under-reporting of Lyme to the detriment
of those affected. Lyme Western Blot is potentially more accurate
if properly utilized. There are nine known kDA Western Blot antibody
bands specific to B. burgdorferi: 18, 23, 30, 31, 34, 37, 39, 83,
and 93. Most LLMDs agree that the finding of only one of the nine
known kDA Western Blot antibody bands specific to B. burgdorferi
in either IgM or IgG is adequate to confirm exposure to this spirochete
and thus confirm a diagnosis of Lyme disease. To get the most sensitive
screening test, all nine bands should be included.
As with any infection, IgM converts to IgG in about two months, unless
there is a persisting infection to maintain an IgM reaction. CDC Western
Blot surveillance criteria for IgM excludes seven of these species
specific antibodies and excludes three of the seven for IgG surveillance
criteria. Typical screening performed by most of the large national
laboratories uses only the minimum of three B. burgdorferi kDA Western
Blot antibody bands and is inadequate for proper identification and
treatment for this population of severely ill and often desperate individuals.
CDC also includes five non-specific, cross-reacting antibodies in its
surveillance criteria: 28, 41,45, 58, and 66. This will cause false-positive
Lyme Western Blots.
The following points were made:
- There are problems
with current standards and recommendations for testing.
- No Lyme
test has 100% sensitivity or specificity.
- Since presence of Borrelia
does not always cause illness, a diagnosis of Lyme disease can
only be made when appropriate laboratory
studies are positive in a patient with the presence of the appropriate
history and/or symptoms.
- The Western Blot is usually covered
under most insurance plans.
- Twenty percent of persons with a negative
Western Blot as currently performed are actually positive (poor
- If a negative Western Blot result is received from
a commercial laboratory, it is imperative to re-test using a specialty
Lyme laboratory that
does all the significant IgG and IgM bands specific
for B. burgdorferi.
- Even if proper testing as suggested above gives
a negative result, if there is strong clinical suspicion of Lyme,
an antibiotic provocation
should be performed before retesting.
Discussion on Lyme Treatment Options
Several aspects of treatment were discussed, including antibiotic therapy,
herbal medicine, HBOT, and the "Salt/C Protocol." All
these treatments have shown some benefit in chronic Borreliosis.
Experiences vary as to the effectiveness of these treatments; however,
it was generally felt that the most dramatic improvements are seen
with the combination of herbal treatments with antibiotics. Practitioners
are seeing improvements in many patients with the Salt/Vitamin C
protocol. It is theorized that this treatment is most successful
with parasitic infections, which lowers the overall infectious burden
in the patient and therefore increases the success of subsequent
therapies. It is not known if the Salt/Vitamin C protocol is actually
effective against Borrelia bacteria or its coinfections.
The topic of Candida infections among children on the autism spectrum
was discussed. A major concern for parents who are hesitant to start
a treatment plan that includes extensive use of antibacterial antibiotics
is the fear of exacerbating Candida or other fungal infections. It
was suggested that a clinician begin a one-month treatment with antifungals
such as Diflucan or other natural antifungal remedies before starting
antibiotics. Probiotics are also an essential course of treatment.
The following are some general principles for treatment of Lyme disease
in children with autism:
- Clinical experience with how best
to treat Borrelia in this population is early and limited.
this fragile population, it is critical to continue to emphasize
that Borrelia and its coinfections are cofactors in the overall
complex of autism spectrum disorder and are not the only or necessarily
- An intact and highly functioning immune system
is essential for handling infections. Treatments that assist in
this area are
likely to simplify
and shorten any antibacterial therapy.
- The DAN! approach emphasizes
the careful assessment and treatment of nutritional deficiencies,
gut dysfunction, and detoxification,
are critical to a highly functioning immune system.
on the adult Lyme population, with the multiplicity of complicating
cofactors in the setting of chronic Borreliosis,
children with ASD
and Lyme may have better clinical outcomes by first addressing
these other issues to achieve a healthier immune status
with antimicrobial therapy.
- Co-infections must also be identified
and treated in conjunction with proper treatment of the Borrelia
- The DAN! approach, which is generally perceived as "evidence-based" and
scientifically credible, yet more holistic than than
a strict allopathic, pharmacologic approach, is well-suited to
dealing with Lyme-related
issues in children with autism spectrum disorder.
Goals for Future Studies
It was the consensus of the think-tank group that an informal preliminary
study be done among physicians to assess the potential incidence
of Lyme disease in the ASD population. In coordination with Igenex
Laboratories and the LIA Foundation, a minimum of five physicians
will obtain Lyme screening test on at least ten children from their
practices and ten controls. The physicians will be located across
the country to obtain a good geographical representation. This data
will be presented to other practitioners working with children on
the spectrum of autism to increase awareness of the problem and encourage
more research in proper testing and treatment of Lyme and Lyme-related
illness in this growing population.
Dr. Anthony Torres of Utah State University is beginning a three-phase
study involving children with autism who are infected with Borrelia.
The first phase of the study to determine the incidence of Borrelia
infections among children with autism will cost an estimated $40,000.
The LIA Foundation is in the process of raising funds for this study.
Grant applications have been made and various fundraising activities
are planned. Support from across the nation is sought.
The LIA Foundation think tank was an unqualified success. The small
group of concerned parents and practitioners were able to share their
knowledge and experience in an atmosphere of openness and compassion.
This made for easy sharing of information and friendly yet productive
discussions. It is the unanimous consensus of the attendees that
Borrelia infections and Lyme-related illness be considered a potential
cause, inciting factor, or aggravating event in autism spectrum disorder.
More research is necessary. More awareness of the possibility of
this problem is necessary. More physicians, especially those already
treating ASD, will need to consider this diagnosis and learn optimal
testing and treatment options. Multiple infections need to be considered
in this scenario.
A Lyme-Autism Connection conference is
planned for June 23-24, 2007 in Irvine, California for parents and
practitioners. This conference
will include a "physician's roundtable," in which more
information can be shared with a larger group of practitioners who
will then be able to implement treatment strategies. For more information
on the conference, research, fundraising events, or to make a tax-deductible
donation, please contact: www.liafoundation.org.