The Puzzle of Autism-Spectrum Disorders (ASD) – Biomedicine as an option for assessment and treatment including those with Lyme's Disease and Borrelia-Related Complex (BRC)
by Kurt N. Woeller, D.O.
Autism presents a level of complexity from a medical diagnostic and treatment standpoint because of the underlying medical issues affecting this special group of children (see below). Also, the prevailing attitude in traditional circles "that nothing can be done for these kids" and that behavior, speech and other types of applied cognitive training therapies are the only way to approach an autistic child doesn't help. This viewpoint creates confusion and doubt amongst parents looking for real answers to their child's health concerns.
This same type of closed-minded attitude by traditional authorities seems to be the current situation with Lyme's disease in the United States today. Current estimates are that 20,000 people are afflicted with Lyme's disease every year (1). These are from cases of known tick-bites. Most of these people if treated early enough with appropriate antibiotic therapy such as Doxycycline for 30 days (2) have a great chance of full recovery. A significant number of those suspected of having Lyme's have no associated or known tick-bite. These people can present with fatigue, inflammatory arthritis, chronic headaches, muscle and joint pain and other type of debilitating ailments. If their initial illness was never treated with Lyme specific therapeutics they person can go years without assessment until an astute clinician considers Lyme's as possible entity. Unfortunately, the current state of affairs for those physicians trying to treat patients with "Chronic Lyme's" by thinking outside the conventional box is very similar to physicians such as myself who know that for the majority of children with autism their condition can be greatly improved with biomedical intervention.
The Lyme's debate is best summarized by the current situation in Connecticut were the attorney general has stepped in to intervene between two competing medical organizations guidelines – IDSA (Infectious Diseases Society of America) and the ILADS (International Lyme and Associated Diseases Society). The debate between the two organizations is how to best treat people who contract the infection each year (1). In short, IDSA's position is simple – short-term antibiotics for known Lyme's patient's is all that is needed with no need or reason for long-term therapy. However, ILADS takes the position that each patients response is different and that longer based therapies are many times necessary. They feel that Lyme's is much more than an acute illness and needs to be adequately addressed in a more comprehensive fashion. ILADS makes the point that other infectious diseases such Tuberculosis and Q-fever need long-term antibiotic therapy and that shorter based treatments based on the notion of acute illness are inadequate. From my personal experience ILADS has it correct.
So what about biomedical intervention for children (or adults) with an autism-spectrum disorder (ASD)? Why is most of the medical profession so close-minded about the potential benefits of biomedical intervention? Finally, is the current situation with Lyme's also affecting a percentage of the autism population? From my position it certainly does and the real possibility is that the Borrelia organism and other potential co-infections, ie. Erlichia, Babesia is another infectious entity that needs to be addressed in these children. First off let's explore the roots of biomedicine for autism and why a comprehensive biomedical approach is necessary.
The Roots of Biomedical Therapy for Autism
The biomedical movement for autism-spectrum disorders (ASD) got its birth from an organization called the Autism Research Institute founded by the late Bernard Rimland, Ph.D. (1928-2006) in San Diego, CA. Dr. Rimland had always felt that autism and its related disorders had its roots in biological causation, and was not just a psychological or neurodevelopment disorder. In his early work Dr. Rimland advocated the use of vitamin B6 and magnesium to help with the cognitive challenges facing autistic individuals. In a significant number of kids who tried this simple therapy it worked very well – better eye contact, improved speech, less hyperactivity were a few examples. From there Dr. Rimland began to collaborate with like-minded physicians who were using nutrition and targeted vitamin and mineral therapies for their chronically ill patients, some of whom were autistic. From these early efforts the Defeat Autism Now (DAN!) organization was born. From their original meetings in Dallas, Texas in 1995 has sprung forth a highly respected group of clinician's and researchers dedicated to researching and treating the various health issues seen so commonly in autistic individuals: Autoimmune and digestive protein disorders (3, 4, 5, 6), digestive problems including chronic elevated measles antibodies (7) yeast and bacteria overgrowth (8), metabolic disorders including detoxification imbalances and methylation defects (9), and heavy metal toxicity (10) and more.
The Defeat Autism Now organization is to be commended for their ongoing dedication to helping unravel the health issues of many autistic children. The DAN! conference held twice yearly is an incredible resource of information for parents and doctors seeking answers to the biomedical issues of children with ASD. Of course, the concepts of good diet, proper immune and digestive function that promote health and vitality are nothing new to the world of natural medicine (and the reader's of the Townsend Newsletter). Natural healers, herbalists and nutritional laymen have for years been promoting healthy diets and the removal of toxins as disease prevention. However, what the DAN! organization has been able to do is bring these issues to the forefront of the autism epidemic which we now face. They are an important bridge between the traditionalists who view ASD as purely neurodevelopmental disorder with no hope for improvement or recovery, much the same way ILADS supports a broader view of Lyme's disease.
The Puzzle Scenario
There are many questions to be answered regarding the cause and treatment of autism, PDD, and other autism-spectrum disorders (ASD). The solutions are not always simple, the cause is often multi-factorial, and the testing and subsequent treatments sometimes complicated and expensive. It is important to realize that with everything in medicine there are no guarantees of absolute illness recovery, especially with complex disorders involving the nervous system. However, there is reason for hope and enthusiasm regarding the biomedical treatment of children with ASD. Much can be done to help these children reach their full potential, and in my experience many children have had significant mental, emotional, and overall health improvements through specific diagnostic and treatment approaches.
Each child is like a puzzle. The factors which influence their physical health and mental/emotional well-being are many. As mentioned above the many physical challenges these children face need to be addressed systematically. A direct approach is prudent and doing good diagnostic assessment is necessary. Also, implementing specific targeted therapies, particularly in the beginning in my opinion has done wonders to jump start the healing process for many ASD patients. However, the puzzle scenario is a real one which creates some difficulties with respects to biomedical therapy because each child will not respond positively to every therapy, whereas another child may respond quite profoundly such a speaking in sentences almost immediately. This can be true for even those kids who are harboring Borrelia as a potential contributing factor in their underlying health condition.
At a recent think tank in San Diego hosted by the Lyme Induced Autism Foundation (LIAF – www.lymeinducedautism.com) the discussion centered around the potential link between autism and infection with Borrelia and other co-infections commonly seen in Lyme's Disease – Erlichia, Babesia, etc. In put from a number of leading researcher's and practitioners in the field of Lyme's suggested that Lyme's disease (borrelia derived by tick-borne contact) may play a role in the autism condition. However, what likely is a more common scenario is the Borrelia organism being contacted by other means – other insect vectors or trans-placental transfer from an infected mother (11).
In this scenario the child is not manifesting with Borrelia infection directly from tick-borne illness (which in my practice upon history taking from parents is almost never mentioned), but instead a more insidious infection without classic acute manifestations as seen commonly in Lyme's disease. The think tank members indicated the need to classify those cases of Borrelia induced illness as something separate from classic Lyme's Disease (which is the term generally applied to Borrelia infection contracted via a tick bite). One term mentioned was Borrelia-Related Complex (BRC) which is multi-factorial disorder complicated by Borrelia and other confounding infections along with a dysregulated immune system that leads to a state of chronic disease. The same pathophysiological manifestation can still exist with BRC as seen in latent Lyme's, but BRC is not a Borrelia infection derived via a tick bite.
A research project is underway with the assistance of those of us who attended the think tank and IgeneX laboratory to evaluate how many autism-spectrum children are actually carrying Borrelia infection in their body. Estimates at this point range from 40 to 60% (estimate given by the Think Tank members from clinical experience), but more conclusive data is needed. The results of this study will go along way in determining the extent of BRC and autism.
The Biomedical Approach – Incorporates Many Aspects of Medicine
A biomedical approach to autism-spectrum disorders utilizes a wide variety of therapies, diagnostic testing, and at times medication (if needed) to optimize each child's health potential. I have listed below a brief outline of how I approach a child with ASD. My initial goal is to obtain critical information regarding a child's underlying health condition while implementing specific therapy to jump start a particula child's cognitive dysfunction such as speech delay, attention and focusing problems, and environmental and social awareness. One of the best therapies I have found for these issues is methylcobolamin injections (see discussion below). I separate my laboratory assessment into two different categories – blood and non-blood. For most children all testing can be done at the same time, but the option for non-blood testing is available in those children were blood testing in the beginning stage of assessment may not be appropriate:
Diagnostic Testing (BHD = BioHealth Diagnostics, DD = Doctor's Data, GPL = Great Plains Laboratory, ISL = Immunosciences, Inc.)
o Comprehensive Stool Analysis (DD or GPL) – evaluates for bacteria, parasitic and yeast overgrowth and infection, as well as markers for digestive immunity and inflammation.
o Organic Acid Test (GPL) – evaluates for metabolic metabolites of yeast, clostridia bacteria, oxalates, and other functional nutritional deficiencies.
o Urinary Peptides (GPL) – useful for peptide assessment from wheat (gluten), soy, and casein. (4,5)
o Hair Analysis (DD or GPL) – evaluates for the presence of heavy metal exposure and certain mineral imbalances such as copper, lithium, iodine, molybdenum and selenium.
o Porphyrin Profile (Labbio Laboratoire Phillipe – www.labbio.net or Great Plains Laboratory) – urine analysis for porphyrin metabolism. Porphyrins are the building blocks for heme synthesis and imbalances indicate heavy metal exposure and toxicity (13)
o Comprehensive Blood Chemistry – including CBC, metabolic profile, liver, kidney, and thyroid assessment.
o Comprehensive Food Sensitivity – evaluates for elevated IgG levels to common food sensitivities as indicators for immune and physiological stress.
o Packed Red Blood Cell Analysis – evaluates for mineral depletion particularly copper, magnesium, selenium and zinc.
o Metallothionein Profile (GPL) – evaluates the functional capacity of metallothionein (an indicator of heavy metal detoxification capacity), as well as zinc, copper, and ceruloplasmin imbalances which appear to be an issue for a subset of autistic individuals (12).
o Viral Panel (BHD, ISL) – evaluates IgG and IgM to common viruses including CMV, EBV, HHV-I, II, and VI, and Varicella. Measles IgG and IgM can be added separately.
o Lyme IgG, IgM and Lyme IFA (IgeneX) – evaluates for common band markers for Borrelia burgdefori.
First line therapy – building block for success
One of the first therapies I implement for any ASD patient is something called methylcobolamin injection therapy (or Methyl-B12) as outlined by James Neubrander, M.D. (14). In my practice this therapy is offered as first line treatment to begin the process of supporting methylation defects (15, 16) and cognitive dysfunction for ASD individuals (14). The process is very simple and is outlined extensively on Dr. Neubrander's website (www.drneubrander.com) with video files demonstrating how the therapy is done. If a parent can begin Methyl-B12 with their child while we are waiting to receive their laboratory tests results than in many cases we can speed up the child's healing response quite dramatically.
In my experience the top 5 areas that are consistently improved for ASD children with the methyl-B12 therapy are: attention, eye contact, language improvement – both receptive and expressive, enhanced environmental awareness, and increased willingness to socialize. For some kids these changes may be subtle at first, while others marked improvement can be seen very early on – sometimes within weeks.
My approach is similar to Neubrander's in that Methyl-B12 therapy is implemented for at least 5 weeks without any other changes to a child's medication, dietary or supplement program. This scenario usually works out just fine as it can take 3 to 5 weeks in many cases to obtain the above listed test results back and then schedule a follow-up laboratory review with the child's parents. The methyl-B12 injections appear to give the most consistent results (14). Other forms of methyl-B12 are available such as nasal, oral or sublingual, but overall response is mixed. Methyl-B12 injections are available via prescription only, but pre-filled insulin syringes are available for ease of administration by either practitioner or parent. For most cases the injections are implemented by the parent on an every 72 hours basis to begin. The injection is given subcutaneous in the outer upper quadrant of the buttocks. The injections are virtually painless, but a lidocaine cream can be applied to numb the injection site if necessary. For more specifics about this important therapy reference material from Dr. Neubrander at www.drneubrander.com or my resource center website at www.mystillpoint.com.
What is the Bottom Line?
Once you have obtained a child's test results back a more detailed treatment program can be implemented based on the patient's needs – whether it be nutritional supplements, dietary intervention such as gluten, dairy and soy-free diets, anti-fungal or anti-bacterial treatment or specific therapy for Borrelia infection if detected. The prioritization of therapeutic implementation is a tricky one. In my experience with ASD, if the parents have begun using the methyl-B12 therapy, my next step would be dietary and nutritional supplementation support. Improving digestive function by eradicating or reducing bacteria and yeast overgrowth is important for long-term success as well. Once these therapies are in place and you are confident the child is being supported nutritionally more direct therapy can be implemented against Borrelia or co-infections, as well as other compounding issues such as heavy metal toxicity, viral loads, etc. All of this, at times, is hard work and takes persistence, consistency and dedication on your part as a practitioner along with the help of each parent to help overcome the complex health challenges for their ASD child(ren). In the end, the rewards can be gratifying and the outcome sometimes miraculous.
The medical issues of many children with an autism-spectrum disorder is an ever-evolving conundrum for physician's and parents. The same can be said for patients dealing with the ravages of Lyme's disease. For those organizations and physicians unwilling to open their minds to the reality of these patient's health challenges they have already become worthless in their ability to help. For those of us left in the battle we must keep searching for new clues and better ways of implementing what we know works and other potential therapies that may benefit our patients.
My approach is just an example of how to deal with the health complexities of children with autism and other related disorders. Whether Borrelia is playing a role or not with a particular child with ASD a thorough biomedical approach is warranted and extremely helpful for many of these kids.
1. Susan J. Landers. Lyme disease debate provokes treatment divide, legal action. AMNews staff. Dec. 25, 2006.
2. American College of Physicians. Guidelines for laboratory evaluation in the diagnosis of Lyme's disease. Ann Intern Med. 1997.
3. Vodjani A, Pangborn JB et al. Infections, toxic chemicals and dietary peptides binding to lymphocyte receptors and tissue enzymes are major instigators of autoimmunity in autism Int.J.Immunopath and Pharmacol 16 no.3 (2003) 189-199.
4. Knivsberg AM, Reichelt KL, Nodland M. Reports on dietary intervention in autistic disorders. Nutr Neurosci. 2001;4(1):25-37.
5. Reichelt KL and Kvisbery A-M. Why diet is useful in some autistic children: results so far. Presentation at DAN! Portland Conference, 2003: DAN! Fall 2003 Syllabus 91-99.
6. Warren RP et al. Deficiency of suppressor-inducer (CD4+CD45RA+) T cells in autism. Immunol Invest. 1990 Jun;19(3):245-51.
7. Singh VK, Jensen RL. Elevated levels of measles antibodies in children with autism. Pediatr Neurol. 2003 28(4):292-4.
8. Tabaqchil S. Abnormal intestinal flora: metabolic and clinical consequences. Gastroenterol Jpn.1984 Aug;19(4):351-62.
9. James SJ, Cutler P, Melnyk S, Jernigan S, Janak L, Gaylor DW, Neubrander JA. Metabolic biomarkers of increased oxidative stress and impaired methylation capacity in children with autism. Am J Clin Nutr. 2004 Dec;80(6):1611-7.
10. Bernard S, Enayati A, Redwood L, Roger H, Binstock T. Autism: a novel form of mercury poisoning. Med Hypothesis. 2001 Apr;56(4):462-71.
11. Lyme Induced Autism Foundation (LIAF) – Think Tank presentations. San Diego, CA. Jan 26-27, 2007.
12. Walsh WJ et al. Metallothioein and Autism. Pfeiffer Treatment Center, Naperville IL (Oct.2001) 5.
13. Chemical Injury and Disorders of Porphyrin Metabolism (http://www.mcsrr.org/resources/articles/S5.html)
14. Myth, Masterpiece or Miracle? James Neubrander, M.D. (www.drneubrander.com)
15. Molecular Aspects of Thimerosal-induced Autism. Richard Deth, Ph.D. Northeaster University
16. James J, Cutler P, Neubrander J, et al. Metabolic biomarkers of increased oxidative stress and impaired methylation capacity in children with autism. Am J Clin Nutr. 2004;80:1611-7.