A Meeting of the Medical Minds - Lyme-Induced Autism Foundation Holds Think Tank for Medical Professionals

by Tami Duncan with contributions by Dr. Jeff Wulfman M.D.

San Diego, CA -- Physicians were invited from all over the country to attend the Lyme Induced Autism Foundation’s (LIAF) first annual Think Tank. The goal of this conference was to discuss the link between Lyme disease / Borrelia and Autism. The idea was to have a diverse group with many methodologies and medical philosophies. The LIAF discussed the best methods for testing and treating this illness with the sensitive immune systems of Autistic children.

Presentations began with the LIAF co-founder, Tami Duncan. She discussed the various programs and the mission for the organization. Each program from the LIA Foundation falls under awareness, education or research. Kathy Blanco, another co-founder, discussed the possible reasons 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.

Throughout the conference, presentations touching on topics such as Immune Function Genes, Testing methods, an overview of the DAN approach (Defeat autism now!), co-infections such as Mycoplasma Fermentens, bioelectric homeopathy and hyperbaric oxygen therapy were discussed in great detail. The beauty of the think tank showed evidence that many of the topics were open forums so the professionals could share in their clinical experiences. Presenters included Professor Garth Nicholson, Dr. Joytsna Shah, Bob Sands from San Diego Hyperbarics, Toby Watkinson, D.C. and John Kucera, M.D. Dr. Jeff Wulfman, M.D. 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 susceptible person, stressors – physical and/or psycho, can trigger the Borrelia bacteria 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. “

In addition, 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 positive (+) is reported on either of these bands, with clinical symptoms, a diagnosis of positive can be made.
If a negative result is received, with strong clinical suspicion, then an antibiotic provocation test should be performed.

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 antibiotics. 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 inturn 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 this 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.

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.

In general, the Think Tank event was a success. A consensus among attendees concluded that Borrelia/Lyme should be considered as a potential cause or the 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, the detailed think tank summary or to make a donation, please log on to: www.liafoundation.org

 

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