Physician’s Think Tank Overview
January, 27th and 28th
San Diego, CA
Written By: Tami Duncan with contributions by Jeff Wulfman, M.D.
Introduction
The goal of this think tank was to discuss the link between Lyme disease / Borrelia and Autism. Physicians were invited from all over the country to attend. The idea was to have a diverse group with many methodologies. The L.I.A. Foundation wanted to discuss the best method for testing and treating this illness with the sensitive immune systems of an autistic child. The following people were present and all contributed from their experiences:
Tami Duncan – L.I.A. Foundation President and Co-Founder
Kathy Blanco – L.I.A. Foundation Vice President and Co-Founder
Antoinette Grewal – L.I.A. Foundation Executive Board Member
John Kucera M.D. – DAN! Practitioner (Defeat Autism Now!) and Family Medicine
Toby Watkinson D.C. – Complex Illnesses
Professor Garth Nicholson –Institute of Molecular Medicine
Anthony R. Torres M.D. – Utah State – Autism Research
Nicola McFazdean N.D. – Naturopath and DAN! Practitioner
Jeff Wulfman M.D. – DAN! Practitioner and LLMD (Lyme Literate Medical Doctor) Warren Levin M.D. - DAN! Practitioner and LLMD (Lyme Literate Medical Doctor)
Kurt Woeller D.O. – DAN! Practitioner and General Medicine
Robert Sands – San Diego Hyperbarics
Teresa Yang, M.D. – LLMD
Geoffrey Radoff M.D. (h) – DAN! Practitioner and Homeopathic Medicine
Dr. Joyatsna Shah – Igenex Labs
Carline Banks – Patient Liason
Presentations
Tami Duncan – L.I.A. Foundation
The day was started off with Tami Duncan, co-founder and president of L.I.A. Foundation. The mission of the foundation was discussed along with details on various programs planned. Each activity of the foundation falls under one of three categories, those being awareness, education and research. It was also discussed the need for funding additional research programs.
Kathy Blanco – L.I.A. Foundation
The next presenter was Kathy Blanco the co-founder and vice president of L.I.A. Foundation. She discussed the present situation in the autism medical community. The possible reasons for why most physicians do not consider chronic Borreliosis as an inciting factor in autism. It was emphasized that an infection based cause needs to be explored in much more detail as the potential cause for autism. She also discussed certain genetic patterning (HLA-D4) that seems to be common in autism patients and Lyme disease patients. It was emphasized that there are many children who are very sick and need the medical community to open their eyes to this issue.
Anthony Torres, M.D. – Autism Research at Utah State (Immune Function Genes)
Dr. Torres discussed the details of the HLA-D4 Immune genes in children with autism spectrum disorder. He also discussed the upcoming Lyme project proposed. The project will consist of…
•Examine DNA from 85 families with an autistic proband for Borrelia b.
•Use existing DNA from 69 families (no autism in family) as a control group.
•Use statistical tools to determine if there are significances.
Funding is being sought from the L.I.A. Foundation for this project, which is approved by the board but awaiting funds from fundraising events, grants and private contributions.
Dr. John Kucera, M.D. – DAN! Practitioner, Family Medicine & Holistic Medicine
Dr. Kucera gave a very detailed presentation regarding the present care being provided to children with Autism Spectrum Disorder. He shared the importance of “healing the gut” with special diets, anti-fungals, probiotics, supplements, fatty acids and herbals. He stated that it is extremely important to detoxify the child who has heavy metal issues with chelation therapy. Many of these children are harboring multiple infections and issues that need to be addressed. In regards to metal burden, he discussed the fact that mercury and lead combined greatly increase the power of these metals to do damage to the body.
It was emphasized that in a child with ASD it is more than just mercury, which is the problem. Other heavy metals, solvents, cleaning agents, fragrances, dyes, cosmetics, pesticides, petrochemicals, viruses, bacteria, molds, waste products, food additives, hormones, xenohormones, antibiotics and pharmaceuticals are considered to impact the immune system negatively in an ASD child.
Children with ASD present many GI problems including diarrhea and/or constipation, abdominal discomfort, anorexia, poor appetite, lesions of ileum and colon, increased intestinal permeability, inhibition of endopeptidase enzymes (dipeptidyl peptidase – IV) needed for the breakdown of casein and gluten.
A unique strategy he indicated was tracking success of treatments through communications with behavior therapists. Many applied behavior analysis therapists keep careful notes and tracking so that success of treatments can be noted based on progress in behavioral therapy.
Dr. Joyatsna Shah – Igenex Labs
Dr. Shah discussed the details of each Lyme test Igenex lab offers. She explained the individual bands, their specificity and sensitivity rates. She gave her opinion on what the most accurate panel would be, how to interpret the Western Blot, which bands are Lyme-specific and the quality control assurances this lab offers.
Professor Garth Nicholson – Institute of Molecular Medicine
Professor Nicholson provided his research into Gulf War Syndrome and how Mycoplasma Fermentens is found at an extremely high rate in the children of parents with Gulf War Syndrome. He also gave research proving that a high percentage of children born to parents with Gulf War Syndrome indeed have Autism (regardless of which parent has gulf war). What was most dramatic is his newest study showing that 58% of Autistic kids have a Mycoplasma Fermentens infection. We discussed the different transmission methods of Mycoplasma Fermentens. Those are … airborne, tick-bite transmission and more. In his research he has also found Borrelia in these children as well. His suggested protocol for treatment of Borrelia and Mycoplasma is printed in his literature available online at: www.immed.org . However, he mentioned the successful use of NT-Factor from Researched Nutritionals, antibiotics, and if a child cannot tolerate antibiotics then herbal treatments from Rain-Tree herbals can be considered.
Dr. Toby Watkinson- bio-electric homeopathy
Dr. Watkinson provided a very unique approach to treatment. Dr. Watkinson deals in difficult cases of many types of chronic illnesses and infections. He spoke about his techniques for unwinding the immune challenged individual to bring about healing. His approach is not duplicatable by other practitioners at this time. Dr. Watkinson is working on this. We saw pre and post treatment lab work, which would confirm that this process eliminates symptoms, which is evident on lab tests.
Bob Sands – San Diego Hyperbarics
Mr. Sands has worked with many patients with Lyme disease and Autism. He has extensive experience with both disorders. He discussed the exact biology of what hyperbaric oxygen therapy does and the most effective approaches to take with a child who has Autism but also Chronic Borreliosis (Lyme disease).
Jeff Wulfman, M.D.
Dr. Wulfman gave a very eye-opening discussion on the differences between Lyme disease and Borrelia/Borreliosis. The following is an excerpt from his presentation.
Lyme = a localized disease caused by a tick bite containing Borrelia. This can be eradicated by short tern antibiotics and may or may not recur, but short-term antibiotic use can diminish all symptoms. Tick borne Lyme can progress to a Chronic Borreliosis/Borrelia Related Complex state.
Chronic Borrelia is an epidemic, which may be transmitted vertically or horizontally with usually no history of a tick-bite. This means that Borrelia is present in the body. A person with Chronic Borrelia may be sick or not. The condition of the host determines the amount of illness. In the immune suceptible person, the Borrelia bacteria can be triggered by stressors – physical and/or psycho emotional. Toxins such as metals, molds, pesticides, etc. can also trigger it. The other category in which the Borrelia can be triggered is by other infections such as babesia, erlichia, bartonella, mycoplasma, candida and virus’ which cause a cumulative effect.
Symptomatic Borreliosis is unique to each person and multi-factorial with multiple-organisms. The condition of the host will determine how effective the immune system can deal with other infections. When a variable response to antibiotics is shown, treating co-factors can show improvements.
Testing discussion
In the think tank, the accuracy and flaws in testing for Borrelia was discussed. The following points were made.
- There are problems with current testing
- No Lyme test is 100% accurate
- The Western Blot is usually covered under most insurance plans.
- If a negative result is received from a commercial laboratory, you MUST re-test with a specialty Lyme lab that does all IgM bands.
- A diagnosis can only be made with lab work + clinical symptoms = diagnosis
- 20% of people with a negative Western Blot result are actually positive.
- Bands 18, 23/25, 31, 34, 37 39, 83 and 93 are specific for Lyme disease. If a + is reported on either of those bands, with clinical symptoms, a diagnosis of positive can be made.
- If a negative result is received, with strong clinical suspicion, then an anti-biotic provocation test should be performed.
Treatment discussion
Several aspects of treatment were discussed, including antibiotic therapy, Chinese herbal medicine, herbal protocols, HBOT and the salt/c protocol. All of these treatments have shown some benefit in treating chronic Borreliosis.
In regards to the effectiveness of these treatments, experiences vary. It was mentioned that herbal protocols, Chinese or standard herbal, have brought about improvements, however the most dramatic improvements are shown when herbal treatments are combined with antibiotic treatments. In discussing the salt/vitamin C protocol, many people are showing improvements with this. However, it is thought that the salt/c protocol is most successful in killing off parasites, which in-turn brings down the overall infection load of the patient, causing improvements. It is not known if the salt/c protocol is actually working on the Borrelia bacteria or it’s co-infections.
The topic of high Candida issues among children on the autism spectrum was discussed. This was a big issue for parents who would be hesitant to start a treatment plan including antibiotics for fear of exasperating the Candida. It was suggested that a clinician begin a one-month treatment of Diflucan prior to starting antibiotics. Including probiotics would also be an essential course of treatment.
In regards to hyperbaric oxygen therapy, the pressure for treatment was an important topic. With the years of experience in treating children with ASD and Lyme patients, Bob Sands discussed a slow, ramp-up method for this therapy. His suggestion would be to start at 1.2 ata and gradually work up to 2.2 ata. The number of sessions would depend on the child and their progress. He feels that a 90-minute session would be the ultimate timeframe. It was also indicated that antibiotics should be used during HBOT to bring about the best results. He indicated that HBOT is to be considered an “adjunct” therapy and not a cure for Borrelia and/or Autism.
Some general principles that may be important in terms of treatment:
· Clinical experience in 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/other infections are co-factors in the overall
complex of ASD and not the only cause.
· An intact and highly functioning immune system is critical for handling the infections.
· Per the DAN approach- treatment of toxins, gut dysfunction, nutritional deficiencies, etc…are critical to a highly functioning immune system.
· Based off of adult populations, who have multiple other factors (heavy metal toxicity, nutritional/gut issues, etc…) in the setting of chronic Borreliosis, they may overall do better with treating these issue first before proceeding to antimicrobial therapy.
· In terms of order of what to do when, addressing the
current DAN factors first- digestion, nutrition, gut, yeast, toxicities,
etc… may be most beneficial. Then, once the overall system/immunity is in a healthier state, adding antimicrobial therapy may have the best chance to be of positive benefit.
· Co-infections must also be treated in conjunction with the Borrelia infection.
Goals for future studies
The L.I.A. Foundation is in the process of raising money for an official study lead by Dr. Anthony R. Torres of Utah State. The estimated cost is about $40,000. Grants have been applied for and the foundation is holding an Improv comedy event with silent auction with hopes to fund this study. The study will determine the average percentage of children with Autism who are infected with Borrelia.
There are two other phases to the above study that will be conducted once the results of the first study are completed.
It was the consensus of the group that an “informal” study should be done among physicians. In coordination with Igenex labs and the L.I.A. Foundation, a minimum of 5 physicians will be running tests on at least 10 children and controls from their practices. The physicians will be located across the country to give a good geographical representation. This is a preliminary study to get an idea of the percentage of children in the ASD population who are affected. This data will be presented to other physicians working with kids on the spectrum to encourage more research, treatments and testing to be applied in this population.
Conclusion
In general, the “think tank” event was a success. A consensus among attendees was that Borrelia/Lyme needs to be considered as a potential cause or inciting factor in Autism. More research needs to be done. More physicians and researchers need to be considering this and testing for Borrelia in their practices. Multiple infections need to be considered in this scenario as well. A conference is planned for June 23rd and 24th in Irvine, CA for parents, patients and practitioners. This conference will include a “physician’s roundtable” in which more information can be shared with a larger group of physicians who can then implement treatment strategies. For more information on the conference, research or to make a donation, please log on to: www.liafoundation.org .
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