Archive for the ‘GcMAF’ Category

Medical Academy of Pediatric Special Needs – Fall 2016

Sunday, September 11th, 2016

This week, the Medical Academy of Pediatric Special Needs held its semiannual conference in downtown Atlanta, GA. This is ‘Ground 0’ for practitioners, researchers and professors from all over the world to meet, learn, explore and discuss a myriad of relevant topics.

Members who have been returning for 100’s of lecture hours generally choose the advanced courses. For some, the conference has become a group of ~50 experienced and knowledgeable practitioners who meet to discuss ‘workups’, basic science, relevant research and treatment protocols for those who are most affected with ASD.

Notes and Observations
Day 1 – Tough Cases
I really enjoyed our lectures by the plain-speaking Dr. John Green, of Portland, OR. Dr. Green not only reviewed those who improved because of his medical expertise, but those who got better in spite of him, those who haven’t gotten better, those who got better but he can’t figure out why, and the most frustrating – patients who improve only to suffer frequent relapses.

Dr. Sid Baker, a pioneer of the biomedical movement, described his early medical experiences in Africa that morphed into his lifelong dedication to treating patients with ASD. He expressed his disappointment that so many conventional colleagues disagree with our practice.

Dr. Baker elucidated how he initiates care with new patients. He discussed increasingly resistant cases, covering topics from severe speech apraxia to the approach to children with injurious behaviors.

The first day was filled with the most frustrating and difficult cases you can imagine. Eminent practitioners Drs. James Neuenshwander, Michael Elice, and Julie Buckley challenged our diagnostic and therapeutic knowledge, attempting to navigate the complicated courses of those who improved and those who didn’t.

Day 2
Dr. Daniel Amen‘s morning lecture was entitled “3D Brain SPECT Imaging”. The takeaway message was that SPECT scans – technology – could/should/will become a mainstay for a multitude of CNS disorders. His manner and stories of research, technical evaluation, and clinical practice, were positively spellbinding and inspirational.

Dr. Theoharides presented his research and extensive knowledge about the important role of allergy in ASD. Dr. Theo continues to publish a mountain of monumental works, not only on the topics of autism and the role of mast cells, but treatments, as well.

Toxins were the subject of the afternoon’s lectures. We learned about the identification of substances in the environment that are dangerous, how they are measured, how damage is done, and the means to control and treat. For the skeptical reader, there was a plethora of supporting scientific evidence of the relationships to autism (and many other modern conditions).

As has become customary, Dr. Dan Rossignol rounded up the day with a roundup of all of the latest scientific research. Rapidly.

Day 3 – Advanced Clinical Cases
Severe behaviors and speech apraxia. For patients who are most resistant to conventional and alternative treatments, essential oils, acupuncture, and even worms were explored as possible solutions.

Throughout the afternoon, cases got even tougher! Lyme, Persistent Lyme, Non-Lyme Lyme, PANDAS, PANS, parasites… an increasing number of reasons to have signs and symptoms that are called autism. Such information extends our knowledge and leads to better diagnoses for our patients, and possibilities for treatment.

Dr. Green discussed biomarkers. Though these ‘labs’ are not specific to ASD, per se, this will become a necessary next step to document level of involvement and response to treatments.

A brand new treatment, repetitive Transcranial Magnetic Stimulation was presented by Dr. Arun Mukherjee. The jury is still out on this expensive intervention.

Conclusions
One important reason that I return to this meeting, is simply that I feel at home among like-thinking practitioners. Members don’t agree on every subject, but we are respectful and actually enjoy our practices.

In traditional medicine, conferences are basically show-and-tell affairs, where researchers report their data, previously published in medical journals. When doctors think outside the box, practitioners with diverse skills, who are scattered over the globe, discover improved results by networking in this fashion.

Patients, parents, and families can feel confident that progress is being made (slowly), as serious, dedicated doctors continue to try to unravel this modern mystery.

Finally, I am proud to report that, at this meeting, I was awarded Fellowship status in the Medical Academy of Pediatric Special Needs.

Medical Academy of Pediatric Special Needs 2016 Spring Conference

Sunday, May 1st, 2016

Practitioners, such as myself, find that it is necessary to attend the bi-annual Medical Academy of Pediatric Special Needs conference for two important reasons. First, to listen to experts from all over the world present their knowledge and latest research. Second, to network with, and learn from, other like-minded practitioners.

What I Liked Best
This year, I chose the ADHD path. The workups that were presented tended to be somewhat complex, and perhaps unattainable for many patients. The bottom line was to get a medical evaluation. The differential diagnosis ranges from thyroid to PANDAS. Mostly all agreed that stimulant and psychotropic meds should not be the first line in treatment. One professor spent some time questioning the diagnosis, itself, and how the modern world has contributed to the epidemic.

What I Liked Least
Traveling all the way to Costa Mesa, CA. Course work is 8 hours per day, so no time for Disneyland, etc.

This Year’s Major Focus
Mitochondrial function continued to play a big role in the presentations. The advanced courses involved lots of methylation, detoxification, and energy production diagrams. The newest twist has been the addition of genetic testing to better determine the cause(s) of inadequately functioning biologic pathways. Single nucleotide polymorphisms (SNPs) and ‘epigenetics’ were the buzzwords – how individual genes interact with the environment and within the individual leading to dysfunction and downstream signs and symptoms.

Topics That Were Discussed in Passing
Microarray genetic testing, covering multiple genes, did not play a big part in this year’s talks. Discussions about childhood immunizations underlie a great deal of the members’ conversations; specifically the lack of solid scientific evidence for safety in high risk populations. Attendees are not against vaccinations, by the way. Lyme disease was discussed in general, and as that inflammatory process relates to other infectious-metabolic conditions.

Subjects Not Formally Presented
GcMAF and nagalase levels. Some patients have indicated that a useful, safe supply may become available, so that will help determine future use. As well, chlorine dioxide, hyperbaric oxygen treatment, helminths, medical marijuana, and stem cell therapy were not offered by this year’s presenters.

Conclusion
It is disappointing to return from such conferences without that ‘magic bullet’. Just standing around, listening to Sid Baker speak about how he got interested in autism, or asking him how the ‘ion cleaning’ footpath worked, is worth the price of admission, however. This science started with Dr. Baker, and he continues to be an inquisitive, gentle force for hope, 40 years later.

In the absence of a sufficient population of scientists who are willing and available to address this modern epidemic of childhood developmental problems, this meeting stands as a bastion against the current state of ignorance.

The Media and Autism

Saturday, July 11th, 2015

Emily Willingham, Forbes blogger and self-appointed autism expert, couldn’t let the story about the death of Dr. Jeffrey Bradstreet pass without injecting her two cents.

Dr. W commenced her comments with a 2,000 by 1000 pixel, scary picture of a syringe and needle. I never saw that photo at the beginning of one of her ‘Vaccination is Perfectly Safe‘ stories. She went on to detail the nefarious activities of a doctor administering a dangerous serum to unsuspecting patients. Em, have you ever heard of botox?

Conjecture, innuendo and professional jealousy notwithstanding, Dr. Bradstreet was the parent of an autistic son, and an early adopter, researcher, and lecturer of biomedical treatment for the disorder. He popularized medical evaluation and protocols to address metabolic variations at a time when the generally accepted cause of ASD was considered to be bad parenting.

All but the most conventional treatments are presented as kooky at best, harmful to patients at worst, and a waste of time and money. Some of the latest national news headlines regarding autism will illustrate:

  • ABC – Jim Carrey Apologizes for Posting Photo of Autistic Boy
  • CBS – Authorities: Anti-vaccine doctor dead in apparent suicide
  • CNN – Another study finds no link between MMR vaccine and autism
  • NBC – ‘You Don’t Outgrow Autism’
  • Fox – Woman says diet is healing son’s autism

Perhaps this situation, more than any other circumstance, hinders further worthwhile (i.e. causes and treatments) autism research. Headlines are made when a researcher is proven incorrect, statistics are questioned, and even a teen’s murderous rampage is presaged with possible links to Asperger’s Syndrome.

Regardless of the manner in which autism as a medical condition got so far off track, a new attitude needs to accompany the message that academics, practitioners, parents and charities project. Even skeptics who questioned the HIV/AIDS situation abandoned the ‘it’s their own fault’ line of thinking.

What can be done?

Autism foundations need to work together. Autism Speaks, The Autism Foundation, Autism Societies, and Local chapters have to find a way to advance positive publicity and useful information. There is little room for discord at this time. An unpopular stance, perhaps, but it can only help in the search for effective treatments.

Researchers need to get out in front of the media so that the epidemic proportions are clear, and that real work is being done to further study. Disagreements, such as increased incidence only being a perception, have already been addressed by the CDC.

Knowledgeable parents are doing the most effective job of finding professionals and insisting on protocols to help their affected offspring. Doctors need to join in this effort and announce the remarkable improvements that occur when biomedical and conventional treatments are combined.

Neurologists need to get on board. Frequently, parents are admonished that, “Nothing more can be done.” Improvements following biomedical protocols are either dismissed as coincidence, imagination, or magic.

Other specialists need to get on board. This means that allergists, pediatric psychiatrists, immunologists, dermatologists, gastroenterologists, and pulmonologists, have to broaden their knowledge base and focus on the patient, not their particular subspecialty. Too often, parents are only informed that the problem does not lie in their domain.

Pediatricians and family practitioners need to get on board. This is the childhood epidemic of our time, doctors; embrace it, learn about it, and take the time to talk to your families.

Autism heroes, such as Temple Grandin, Drs. Martha Herbert, Susan Swedo, Robert Naviaux, Richard Frye, and Jill James are modern medical role models for the next generation. The media, including Forbes, needs to highlight these personalities, rather than obfuscating this important issue with titillating stories and dogmatic posturing.

Conclusion
People who have Parkinson’s disease are not Parkinson’s experts, nor are people with cancer oncology specialists. Lorenzo’s oil is the exception, not the rule. Insiders and outsiders alike, need to embrace those who are doing real work to solve this problem.

The autism community includes a large, diverse population of well-meaning, knowledgeable and competent people. Together, we will understand and conquer this devastating scourge on our youngest constituents.

Wouldn’t it be nice if the media extended a helping hand?

Where Have All Those Autism Treatments Gone?

Sunday, March 8th, 2015

Secretin, OSR, Namenda (memantine), Bumex (bumetanide), Actos, Spironolactone, and more, have all been prescribed to improve the signs and symptoms that ASD individuals experience and display. Some are only used in rare circumstances, others are no longer even available. Now, it’s GcMAF.

The Situation:
For several years, that macrophage-boosting blood product has been used to improve immune functioning in various conditions, including ASD. There have been reports of successful amelioration of negative behaviors and facilitating communication.

At The Child Development Center, there have been 25 patients who received the product, either by subcutaneous or sublingual route. As reported here, ten of the children improved enough for the parent to re-order a ~$1000US solution. Improvements were reported in cognition, communication, and even toilet training.

Without any explanation regarding why the company no longer produces, GcMAF.eu now redirects the user to GcMAF.se (France to Switzerland). The site has the following disclaimer:”… it is not possible to purchase GcMAF here… A dozen companies have claimed to make GcMAF. Most of them failed…”

The website offers alternatives that are less than reassuring. “Immunobiotech.eu, … the most professional company in this field.” “An Israeli company was offering GcMAF at $1,000 a shot, but many of the people using it did not believe it worked. It was probably inactive.” Or, they plainly disparaged the product. “Saisei Mirai – a Japanese company… Somewhat risky to inject in our opinion, and their research papers don’t seem to show good results”.

The Outcome:
Presently, when one door closes on the medical treatment of autism, there are few remaining ones to explore. Conventional prescriptions gain a stronger foothold, no matter how limited they perform, or how serious are their side effects.

Professionals feel compelled to assist in ameliorating aggressive behaviors with strong CNS medications, such as Abilify, Risperidone, or even Zoloft, Prozac, and Klonopin. No medication promises to assist the acquisition of speech and language.

Alternative treatments, which may carry reduced evidence of usefulness or safety take a stronger hold, as well. Parents who are seeking improvements are neither foolish nor ignorant – they are desperate. Families are left to evaluate anecdotal reports and Internet stories.

The Conclusion:

A great deal can be learned by the experience of those treatments
that have become less popular, or even extinct.

With an ever-increasing incidence of ASD, more therapies are bound to be invented and evaluated. Parents are not going to give up their fight simply because they are admonished about being ‘unscientific’ or ‘over-‘ emotional.

As more professionals experience affected patients, newer trials are bound to take place. When pharmaceutical companies see an improved return on their investments, they are more likely to join the effort. Increased prevalence boosts enrollment in scientific research.

There is a common theme of gut improvement and addressing immune function. Mostly, what the storage locker of trial treatments contains, are some important keys to understanding, treatment and prevention.

GcMAF Autism Treatment Update

Monday, August 25th, 2014

Earlier in this century, it was reported that 1) Some cancer patients demonstrated an elevated level of an enzyme, called nagalase, and 2) When patients have been given a purified blood product, GcMAF, which acts as sort of an antidote, there have been reports that treatments were successful in some medical conditions.

Because of elevated levels of nagalase in children with ASD, it was suggested that the same treatment could be helpful to address inflammation in autism, as well.

So, for the past couple of years, The Child Development Center has been treating a small number of patients with a protocol, slightly modified for this pediatric practice. The first blog, explaining the therapy, appears here. Six months ago, I reported on our initial experience.

My conclusions at that time were: improvements were generally seen in children older than 5 years, females appeared to respond better, some showed dramatic improvements in speech and cognition, and most parents were satisfied enough to re-order the product. In the past 6 months, there have been more patients and additional experience, particularly learning about lower dosing and altering dosage depending on signs and symptoms. Most recently, there is a new, ‘improved’ version of GcMAF to evaluate.

Side effects, while not severe, are variable, from slight rashes and fevers to increased aggression, especially in the first month. The product is well tolerated.

What is GcMAF? Macrophage Activating Factor is a purified human protein. It arrives as ~1/2 tsp of a clear liquid that requires immediate refrigeration. Macrophages are cells that play a role in cleanup, immunity, muscle regeneration, and wound healing. With such capabilities, it is not difficult to imagine that some types of autism could be addressed by boosting the activity, especially if there is interference from another substance (nagalase).

GOleic, the newest preparation, is GcMAF attached to a native oil. According to the manufacturer, “oleic acid is found naturally both in the human body and in olive oil; it is the first thing GcMAF looks for once it enters the body. In the laboratory it is many times more powerful than standard GcMAF…”.

The company representative stated that, “There is a reported increase in positive results to 25% from 15%.” This may not seem like much, but it represents improvement in a population that was previously stuck at a level of autism demonstrating very-little-to-no improvement for years.

Some of the claims made on the GcMAF.eu website require additional scrutiny. The only documented ASD experience, so far, is an anecdotal report on 2000+ patients, that asserts “15% have their autism eradicated.” That is not my observation. The implication of unknown viruses as a major cause of autism has not been borne out in conventional literature.

How much does it cost? The new preparation is now available in a sublingual form, which is preferable to the subcutaneous (injection) route, for most families. “GOleic’s price is €450  plus €60 shipping. It arrives in either a vial, (treat as GcMAF) or a dropper bottle…” Given once or twice a week, there are enough doses so parents can assess response and decide whether to re-order.

Conclusion:
Protocols that assess the immune system and nutritional integrity, plus optimize gastrointestinal function, have proven quite effective in the majority of younger patients. When continued treatment does not result in communication or behavioral abatement, parents seek more assistance. The conventional medical advice is to get even more therapy (often, not covered by insurance) or prescribe harmful medications, such as risperdal and prozac.

To date, GcMAF therapy is no panacea. However, treatment appears safe and has provided some advancements in cognition and communication, especially in patients who have not seen similar improvements in years.

The jury is still out. Experienced parents have been through the cycle of hope-hype-disappointment of previous clinical trials. Autism is a huge hurdle, and GcMAF represents a possible useful piece in the treatment puzzle.

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