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From the Townsend Letter
April 2007


An Overview of the LIA Think Tank
by Tami Duncan and John Kucera, MD, with contributions from Jeff Wulfman, MD

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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 health issues.

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 (CO)
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 (UT)
D. Tobin Watkinson, DC – Homeopathy, Electro-medicine, Complex Illnesses (CA)
Kurt N. Woeller, DO – Integrative Medicine, DAN! Practitioner (CA)
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 connections.

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 now available.

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 at

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 Foundation.

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 clinical 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 specificity).
  • 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.
  • In 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 the primary cause.
  • 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, which are critical to a highly functioning immune system.
  • Based 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 before proceeding with antimicrobial therapy.
  • Co-infections must also be identified and treated in conjunction with proper treatment of the Borrelia infection.
  • 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:

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