We cannot suggest a dosage, as leukodystrophies are serious diseases that require the intervention of a competent neurologist and preferably close monitoring by various health professionals, including a nutritionist.
lorenzo oil, which consists of ereutic and oleic acids, extracted from rapeseed and olive respectively, is a monounsaturated oil that inhibits production by the body of very long chain saturated fatty acids. This oil is given to people with leukodystrophy, in the hope of preventing or delaying the neurological deterioration that inevitably accompanies diseases in this group.
Leukodystrophies refer to a group of orphan genetic diseases of the central nervous system. They affect the myelin which makes up the white matter of the brain and spinal cord. Myelin is a sheath that envelops the nerve fiber and allows the proper transmission of nerve messages.
Adrenoleukodystrophy, which mainly strikes young boys (usually around 4 years old) 10 years), causes the deterioration and loss of myelin, which causes loss of vision, hearing and swallowing reflex, deterioration of learning and speech abilities, motor disorders, fatigue, vomiting, autonomic seizures, dysfunction of the adrenal glands, increased skin pigmentation, dementia and death. Adrenomyeloneuropathy is a form of the same disease that strikes adults (usually around 21 to 35 years old) and progresses less rapidly.
All leukodystrophies are associated with congenital dysfunction of lipid metabolism. These rare congenital diseases lead to an accumulation in the body of very long-chain saturated fatty acids (more than 22 carbon atoms in a molecule), which causes neurological disorders.
Lorenzo Oil was developed by Augusto and Michaela Odone in 1987 in hopes of treating their young son Lorenzo, who has adrenoleukodystrophy. Faced with the inevitable neurological deterioration of their child, the parents, who had no scientific training, embarked on an intensive study of this disease. They went so far as to organize an international scientific symposium on the subject and worked in collaboration with a world specialist in this disease, Dr. Hugo Moser, of the John F. Kennedy Institute for Handicapped Children, in Baltimore.< /span>
In 1987, the year Lorenzo's oil was created, the The child's condition had already deteriorated greatly. Doctors expected him to die any week now. The parents decided to undertake the treatment. Twenty years later, he is still alive, but he is blind, no longer speaks, hardly moves, is fed by nasogastric tube and reacts only weakly to external solicitations. The Odone couple are convinced that their son's survival is attributable to Lorenzo's oil and that it would be possible to save the lives of other children suffering from the same congenital dysfunction if treatment were started before the first symptoms appear, that is, at the time of the asymptomatic phase.
History has been the subject of a film, released in 1992: The Oil of Lorenzo, by George Miller, with Susan Sarandon, Nick Nolte and Peter Ustinov.
Today Lorenzo's mother died and his father died in 69, continues to care for his son and the Myelin Project (see Sites of Interest), a foundation he started to support research into ways to regenerate myelin. However, research on the effectiveness of Lorenzo's oil has not progressed much. It is considered an investigational drug in the United States and is only available to patients participating in a clinical study. Manufactured jointly by two British firms, Lorenzo's oil costs from US$150 to US$220 for a monthly supply, depending on the dosage administered.
Adrenoleukodystrophy and Adrenomyeloneuropathy are considered incurable diseases. There are only two approaches to treat them: bone marrow transplantation, a relatively risky procedure that produces mixed results, and the administration of monounsaturated oils, mainly Lorenzo's oil, which in some cases would prevent neurological degeneration when given before symptoms appear.
For ethical reasons, clinical studies generally do not include a placebo group for fear of depriving a patient of potential medical help. Most of the time, therefore, we only have open trials or case studies in which we have to content ourselves with observing the evolution of the disease. Therefore, it is difficult to assess the actual effects and clinical usefulness of Lorenzo's Oil.
In 1989, a team of researchers, including Augusto Odone, conducted a double-blind placebo crossover clinical trial in 12 children with adrenoleukodystrophy. The results indicated that the mixture of ereutic and oleic acids (Lorenzo's oil) had the effect of returning blood levels of very long chain saturated fatty acids to normal. However, only two of the subjects, who were less affected than the others at the start of the study, experienced a stabilization of their condition, while the disease had progressed in the patients who, at the start, were more severely affected1. span>
There have been isolated reports of children suffering from adrenoleukodystrophy whose The condition improved thanks to Lorenzo's oil, such as this 5-year-old Japanese man in whom an improvement in the swallowing reflex was observed accompanied by a regression in the process of deterioration of myelin2.
However, in the majority of observed cases, Lorenzo's oil n did not lead to significant regression or stabilization of the disease3-6. It is actually thought that the amount of oil that crosses the blood-brain barrier, that is, passes from the blood to the brain, is too low, which could explain these disappointing results7-9.
There still remains the possibility that the oil may prevent neurological degeneration in subjects who are still asymptomatic10-12. In a study without a control group conducted by Dr. Moser and published in 2005, the effect of treatment with Lorenzo's oil combined with a low-fat diet was evaluated over a six-year period. The 89 subjects were children who carried the gene responsible for adrenoleukodystrophy, but had no symptoms of the disease (i.e. no brain abnormalities). The authors of this clinical trial believe that the treatment has reduced the risk, for the subjects, of suffering from the morbid complications associated with the disease and they recommend the use of this oil as a preventive measure, that is to say to slow the progression of the disease in its asymptomatic phase13.
The results of a control group trial published in 2006 and conducted with of symptomatic patients report that treatment with Lorenzo's oil has no noticeable antioxidant effect, which may explain, at least in part, its inability to arrest disease progression when it does occur14. span>
As Lorenzo's Oil may cause a decrease in blood platelets (see Adverse effects, below), it is contraindicated in case of thrombocytopenia.
Prolonged administration of Lorenzo's Oil may cause a decrease in of blood platelets15-17.
In one trial, cases of asymptomatic neutropenia were reported, a disorder that affects the immune system.
With plants or supplements
Theoretically Lorenzo's oil effects could add to those of plants or supplements whose action is anticoagulant or antiplatelet.
Theoretically Lorenzo's oil effects could add to those of synthetic drugs whose action is anticoagulant or antiplatelet.