Lorenzo’s Oil And Adrenoleukodystrophy… ALD
In my opinion, there was no doubt that the mixing of pharmaceutical dollars, politics and healthcare had been to the great detriment of society. It seemed we now had “more disorders” than ever – so many disorders basically nonexistent just a couple of decades ago. Trends pretty well only on the “upswing”. Very few, it seemed, were disorders that were actually “reversing” in terms of how many were afflicted.
It was in early 2003 that I became aware of yet another “rare” disorder – adrenoleukodystrophy - or “ALD” – another disorder with “so many parallels” to autism!
In 1992, a film was made called Lorenzo's Oil, based on the true story of a young boy who suffered from this rare disorder. Interestingly, in the film, we were told that this disorder was basically "unknown" in 1973, yet, today, like so many other "once virtually non-existent disorders", more and more were becoming afflicted. Some placed those impacted at one in seventeen thousand.
It was only twenty years ago that autism was considered to be rare also with one in ten thousand impacted. Yet, today, only twenty years later, with the passing of only one generation, the rare disorder of autism was now epidemic. Would the same be true of ALD – a disorder that appeared to be even worse than autism!
As I watched this movie, many, many red flags were being raised. Although Lorenzo’s Oil was, emotionally, very difficult to watch (not a movie I, personally, would show young children), the parallels between ALD and autism were definitely there.
First, there were the symptoms: rage, “animal-like fits”, hyperactivity, impairment of motor skills, gradual onset, the “deaf child” syndrome (ears worked fine but the brain was not properly processing what it heard), neurodegeneration, seizures, impact on vision, aggression, withdrawal, mutism, abnormal postures, mood swings, problems swallowing, diet protocol, limb apraxia (i.e., eating with fingers because of inability to hold utensils), immune system problems, abnormal gait, toe walking, memory issues, jerking motions, etc. A “heartless disease” – words often also associated with schizophrenia, autism and Alzheimer’s!
But, the most interesting parallel was the fact that, in ALD, an enzyme appeared to be “malfunctioning” and, as such, long fatty chains were not properly broken down. As a result of that, these long fatty chains accumulated in the brain and led to neurodegeneration, specifically, to the destruction of white matter. In this disorder, there was severe demyelination going on. The outer protective coating of myelin that surrounded nerves and was so critical to neural transmission was being totally destroyed. This disorder seemed to be “genetic” with mutations clearly linked to the mother’s side only – the X chromosome from the mother! I wondered if this could be another “blame it on the mother disorder”. On the surface, it certainly did seem that this disorder was “caused” by the mother’s genetics, but was it really? My thoughts on this would be provided later in this text.
Autism, Alzheimer’s, ALD… in all three… an enzyme not working… an enzyme not working… an enzyme not working! This certainly, once again, sounded all too familiar!
In autism, children were known to have a problem breaking down casein and gluten. Here, the problem with enzymes was not with fatty chains but rather with casein (dairy proteins) and gluten (grain proteins) although in autism, there were also low essential fatty acid levels. Many parents, including myself, had put their children on digestive enzymes that broke down casein and gluten. An enzyme not working… an enzyme not working… an enzyme not working!
In Alzheimer's, again, an enzyme was not working properly... and this time, it was long chains of a protein called beta amyloid that formed on the brain. Amyloid proteins were known to be altered by heme deficiency.
Interestingly, in Alzheimer's, casein kinase 1 was also known to be at thirty times the level it should be in the brain.
“Casein kinase 1”, that sounded a lot like “something” that could play a role in the breakdown of casein. Research appeared to also be indicating that casein may also cause amyloidosis in lab animals. Casein kinase 1 was somehow associated with - dna repair!
So, if this "casein kinase 1" thing was not working properly, did that mean that dna repair was not working properly either? If the body had “something” (casein kinase 1) associated with “dna repair”, did that not mean that this was a “function” that should normally occur in the body – that within the body existed natural mechanisms for the body to repair, at least to an extent - dna damage?
If casein kinase 1 was somehow associated with both “milk” and dna repair, could that explain why milk was man’s “first food”? It would seem to me that if “milk” was somehow associated with dna repair, and mercury, aluminum or iron poisoning somehow “knocked out” the mechanisms involved in the breakdown of milk, would it not stand to reason that we would have “genetic mutations” given dna repair functions appeared to be impaired?
There was a lot of “fat” in milk. Yet, the liver, the organ that helped break down fats via bile production, did not produce bile until at least six months of age. Why not? What was the connection – if any? Bilirubin, what was now being shown to be the most powerful anti-oxidant known to man, was a fatty acid produced by babies. Could that explain why bile was not produced until at least six months of age – in order to give bilirubin a chance to “do its thing” in the newborn child – to boost his immune system – and in order to give milk the opportunity to help the newborn with matters of dna repair! Needless to say, I did find this all rather interesting.
ALD… autism… Alzheimer’s… an enzyme not working… an enzyme not working… an enzyme not working!
Problems with... the breakdown of fats... the breakdown of casein and gluten... the breakdown of beta amyloid...
An enzyme not working.... an enzyme not working... an enzyme not working.... and in all cases...no matter what the enzyme in question... the result was neural degeneration!
I could not help but wonder… was the “enzyme not working” just a “symptom” or “side effect” and not the “underlying cause”! Like “jaundice”, had science misunderstood this too! Three disorders involving neural degeneration – three different enzymes – but regardless of the enzyme, the impact was the same – neural degeneration! Different enzymes, different “genetic mutations”… but the very similar results! I continued to research parallels among these disorders.
In no time at all, I had found yet another parallel between ALD and Alzheimer’s. Research conducted by Alex Roher, M.D., Ph.D., director of the Sun Health Research Institute in Sun City, Arizona (http://www.eurekalert.org/pub_releases/2002-09/acs-adm091802.php), was now indicating that perhaps it was the white matter that was first impacted in Alzheimer's - causing demylenation of nerve cells - just as in ALD! Dr. Roher’s research findings were originally published in a Sept. 17 print edition of Biochemistry. This was a peer-reviewed journal of the American Chemical Society.
Note also that in ALD, cerebellar white matter was impacted. The cerebellum – that part of the brain most clearly shown as being very impacted in autism. ALD was believed to have “a genetic link” – involving a mutation on the X chromosome of the mother and that pair of chromosomes that determined the child’s sex – that part of the “genetics” that came from the mother. The mother was said to be “the carrier” of the disorder, passing it down to sons. Note again, “sons” were more impacted – just as in autism. Was this an “aluminum linked mutation”? I truly wondered! Although it was only a theory, I suspected very much that “blame it on the mother” had perhaps once again resulted from science perhaps not understanding critical pieces to the puzzle (more thoughts on this later).
Although we usually thought of "white matter" when we thought of myelin, the fact was that gray matter also contained myelin - just in lower concentration! The destruction of myelin certainly would explain the “attention, cognitive transition and slower reactive time” issues so often associated with these disorders.
ALD - another disorder... another mystery... another problem with metabolism and "proper breakdown" leading to neural degeneration. As I looked at all these degenerative disorders, I could not help but wonder about these parallels! Was all this "just coincidence" – again?
Although multiple sclerosis was perhaps the best known demyelination disorder, there were now so many “demyelination disorders” as explained on the website of The Myelin Project – the organization started by the family whose story had been told in Lorenzo’s Oil: http://www.myelin.org/diseasesinbrief.htm.
Although autism, Alzheimer’s and schizophrenia were not “classified” as demyelination disorders, dysfunction in myelination processes had definitely been identified in these disorders as well. If aluminum, found in so many vaccines, was a known gene mutant, would it not impact cell division and regeneration of myelin? Could aluminum also not have “something” to do with the unstable allele doubling seen in so many disorders today?
After twenty years, "Lorenzo's Oil" was still considered "an experimental treatment" by the FDA. Children with ALD, prior to the formulation of Lorenzo’s oil, usually died within two years or so of diagnosis. Yet, Lorenzo, diagnosed around age six, was still alive twenty years later, and as such, Lorenzo's Oil had to be doing "something right". How long of a study did the FDA need? “Experimental treatments” usually meant “higher costs” because of the lack of “general availability” to the public. Lorenzo’s oil was costing families approximately $450 US dollars for a two week supply.
Yet, how was it that the FDA had no problem approving vaccines that combined five viruses and often included mercury and aluminum as well - based on a vaccine study that lasted only thirty days - especially when one remembered that there had been virtually no studies in the last eighty years on the safety of mercury in vaccines? How was it that so many drugs were being approved with trials lasting only thirty days to a few months?
Twenty years… thirty days… Hum…
With so many parents worldwide now pointing the finger to vaccines as a possible cause of autism in their children, you would think the FDA would require long-term studies when it came to approving new vaccines and new drugs for the treatment of these disorders. So - why the huge discrepancy in terms of "what was required to get FDA approval"? If Lorenzo’s Oil had allowed children to live decades longer than they should have been living when diagnosed with ALD, did that not merit FDA approval? As with any “treatment”, could parents not simply be provided with the adequate “warnings and side effect notices” that accompanied all drugs or treatments for Lorenzo’s oil, too? Why the discrepancy in providing FDA approval for a treatment option that clearly had been “life saving”?
Certainly, there was the age-old eveolution-based “quality of life – survival of the fittest” argument that “quality of life” was more important than life itself. From what I had seen in Zachary through our journey with autism, at times, there had been only small glimpses that he still understood – small indications – if ever so minute – like his butterfly kisses – described in my first book, Saving Zachary: The Death And Rebirth Of A Family Coping With Autism!
Of course, there were those who thought that death - for persons suffering from such disorders as autism, schizophrenia, Alzheimer’s, ALD, etc. - was “deliverance”. There was no doubt that it was very difficult to let go of a loved one – especially a child. No one could judge the heart of another when it came to wanting to keep a loved one alive – no matter what others may think. I simply could not believe this. As bad as things could be, life – all life – was so very precious!
From everything I had seen in my own son, yes, there had been a time, very, very early on, when I, too, wondered if death would have been “a deliverance” for Zachary. When we first discovered Zachary had autism, I felt I had died. The thought of my child being lost in his world – alone – seemingly not understanding anything about him, truly horrified me. Yet, I could not give up on my son. I had to fight – I had to try to “save Zachary” and looking back, I was so glad I had fought that fight. He had now come such a long way. I was finally getting my son back. This was a battle I, too, like Lorenzo’s parents, would fight to the death for my son!
I understood, completely – the hope – Lorenzo’s parents had also had and their will and determination in not giving up. Every little step forward – no matter how minute – always renewed the hope of greater strides in the future. Had these parents given up and not found Lorenzo’s oil, fewer families would have hope for their ALD children today and many more children would have experienced the tremendous neural degeneration of ALD. It was always easy to criticize families who held on – even when facing what appeared so hopeless – but, it was much more difficult, to be understanding! For science to move forward, we needed pioneers.
Yet, there had been still another parallel I had noticed in Lorenzo’s oil… the simple fact that once again – environmental intervention – an oil – could so slow the progress of a disorder believed to be “genetic”. How could that be? Again this made no sense to me. Had “genetics” been somehow “reversed” in children with ALD as a result of Lorenzo’s oil? That seemed rather unlikely.
An enzyme not working… an enzyme not working… an enzyme not working… autism… Alzheimer’s… ALD… all disorders impacting nerve cells and metabolism… all disorders that now seemed to have a lot more in common than I could ever have imagined.
As I thought about ALD, Kathy Blanco’s report came to mind again… especially her comments relating to “myelin damage” in children with autism.
Myelin damage was the “hallmark” of ALD. In this disorder, the brain’s white matter was devastated.
“Iron is a powerful immune system modulator…excess iron causes a hyperactive immune system…a hyperactive immune system causes an allergic response to food proteins – particularly gluten, gliadin and casein…Clostridium and Candida can benefit from excess iron…microglial cells (specialized immune cells in the brain) are particularly vulnerable to iron deposition problems in the brain…children with autism show evidence of myelin damage and antibody response to myelin… oligodentrocytes are rich in iron receptors…glutathione, if not present, can enhance iron toxicity…high ammonia levels are signs of iron overload…researchers report hypogammaglobulnemias in children with autism…men suffer from symptoms of iron overload at an earlier age… excess iron in the system can cause damage to many body organs… it can destroy the pancreas especially… in some disease states, iron remains free in the plasma… iron-binding proteins called lactoferrins are concentrated in human milk and are found inside human white blood cells…etc.”[end of quote, emphasis added: Kathy Blanco, Iron Overload And Autism dated August 2002, http://www.childscreen.org/Iron%20Overload%20and%20Autism.htm].
Oligodentracytes… rich in iron receptors…oligodendrocytes… the very cells that were the focus of study by the myelin project – the organization started by Lorenzo’s parents to investigate demyelination disorders such as ALS and multiple sclerosis!
Indeed, according to this site,oligodentracytes were the primary iron containing cells of the brain http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?holding=npg&cmd=Retrieve&db=PubMed&list_uids=8776576&dopt=Abstract. I quote:
“Oligodendrocytes are the predominant iron-containing cells in the brain. Iron-containing oligodendrocytes are found near neuronal cell bodies, along blood vessels, and are particularly abundant within white matter tracts. Iron-positive cells in white matter are present from birth and eventually reside in defined patches of cells in the adult…. The only known function of oligodendrocytes is myelin production, and both a direct and indirect relationship exists between iron acquisition and myelin production. Iron is directly involved in myelin production as a required co-factor for cholesterol and lipid biosynthesis and indirectly because of its requirement for oxidative metabolism (which occurs in oligodendrocytes at a higher rate than other brain cells). Factors (such as cytokines) and conditions such as iron deficiency may reduce iron acquisition by oligodendrocytes and the susceptibility of oligodendrocytes to oxidative injury may be a result of their iron-rich cytoplasm. Thus, the many known phenomena that decrease oligodendrocyte survival and/or myelin production may mediate their effect through a final common pathway that involves disruptions in iron availability or intracellular management of iron.” [end of quote, emphasis added: Connor JR, Menzies SL, Department of Neuroscience and Anatomy, M.S. Hershey Medical Center, Pennsylvania State, University College of Medicine 17033, USA, Relationship of iron to oligodendrocytes and myelination, PMID: 8776576 Medline, available online at the following website: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?holding=npg&cmd=Retrieve&db=PubMed&list_uids=8776576&dopt=Abstract]..
Was this again – “just coincidence”?
Note that white matter was known to develop in a wave from front to back and that its development, although present from the time of birth into adulthood, had a period of tremendous growth between the ages of three and six. Lorenzo had been diagnosed with ALD around age five. This also made me wonder how iron metabolism changed over time and how viruses fit into all of this given that viruses were known to thrive on iron. I also wondered as to the possible role of mercury in all this. Had mercury targeted immature white matter cells in the process of developing? Mercury, after all, certainly did appear to have a propensity for developing cells.
I knew that the brain reached ninety five percent of its adult weight by the age of six. The development after age six – that last five percent - appeared to be primarily in gray matter development.
Needless to say, I was beginning to suspect that in adrenoleukodystrophy, we were probably seeing the effects of iron overload on those cells most closely associated with iron metabolism in the brain and this certainly made me wonder how “Lorenzo’s oil” impacted iron metabolism given that it could tremendously slow the progress of adrenoleukodystrophy or ALD.
Given white matter was so closely associated with iron receptors, and myelin provided for neurons the ability to communicate more efficiently, I now understood a little more why “transition issues” were so common in disorders such as ALD, autism, schizophrenia and Alzheimer’s.
Indeed, the more I read as a parent, the more I wondered how many “other illnesses” might be related to mercury, aluminum or iron poisoning that, in the past, had simply been attributed to the "aging body" or "genetics".
The elderly never seemed to be as "badly off" as they were today and the prevalence of "other illnesses" seemed epidemic on so many fronts – in spite of billions spent on healthcare and research. In my opinion, never had nations spent so much on healthcare, yet been “so sick” and suffering from so many “epidemics”, so many disorders involving neural degeneration – so many – scientifically impossible – “genetic epidemics”!
Of course, everyone had his/her own "comfort level" with all of this. I only knew that my "coincidence comfort level" had gone out the window a long time ago.
Certainly, there were genetics involved in all this, but I was beginning to suspect that the “genetics” were the result of "genetic mutations" due to aluminum exposure as opposed to "normal genetics". Surely, there were other "contributing factors", such as diet, in many of these disorders, however, there was just a little "too much coincidence" between Alzheimer's, autism and all these "other illnesses".
There were also those who thought that families should leave science to science – to the “professionals”, “the experts” and that laypersons should not delve into matters they did not “understand”. Well, to that, I could only reply that parents were the ones with the twenty four hour seven day a week living lab. So, who really had put in the time? Who really were “the experts”?
Certainly those in science understood a great deal in terms of these issues, but for science to underestimate the ability of parents to understand these disorders was a serious mistake indeed!
The “experts” once believed the earth to be flat! The “experts” once believed that “refrigerator mothers” caused autism. The “experts”, in many cases, continued to argue that vaccines, mercury and aluminum could not possibly be related to autism. The experts had for so long failed to recognize iron overload issues resulting in “hemochromatosis” – a “genetic” disorder apparently carried by one in ten. If ten percent of the population had this “genetic factor”, how was it that very few even knew of this disorder? How was it that its effects and mutations had not been recognized earlier as a potentially huge problem for society?
I suspected “the experts” would – soon - once again, be proven wrong – by those “non-scientific, not medically trained” but more determined than ever - parents!
The simple fact was that although parents did not understand “all the science” behind these disorders – clearly, neither did the scientists! Frankly, I found “my guesses” and “theories” to make just as much sense as that of “the experts”. And, the fact was, this “parent” in Lorenzo’s Oil had found something that science had totally missed! It had not been the first time a “layperson” had made a major scientific find – and surely, it would not be the last!
As I had stated earlier, one certainly did not need to be a chemical engineer or a fireman to know:
"Where there's smoke... There's fire! "