given the severity of their illness and lack of effective disease modifying agents, it is not surprising that most patients with als consider trying complementary and alternative therapies. evidence supporting a survival benefit related to energy balance in als patients has been collected primarily from population studies that include assessment of bmi and malnutrition. dysphagia is present in 45% of patients with bulbar onset disease at diagnosis, and approximately 81% of all als patients will experience dysphagia as a symptom of als (23). in a recent clinical trial, comparing the potential of high calorie diets enriched with either fat or carbohydrates to restore weight in 24 individuals with als, both strategies were reported as safe and effective after 12 weeks of treatment (29). in the setting of a terminal disease without ample choices for disease-modifying therapies, these patients assert their autonomy and report that they self-medicate with dietary supplements to improve general wellbeing and slow disease progression (3). below is a select list of supplements, most with antioxidant properties, that have been proposed as potentially beneficial for the als patient. supporting biologic plausibility for catechins in the treatment of als, in vitro studies revealed that epicatichin-3-gallate reduced hyperexcitability in sod1 motor neurons by interfering with glutamate hyperexcitability, and had a rescue effect in motor neurons exposed to h2o2 (44). idebenone continues to be available online through neutraceutical providers, and is included as one of the key supplements in the deanna protocol. resveratrol is a polyphenol found in the skin of grapes, blueberries, raspberries and mulberries. the authors hypothesized that homocysteine may be a biomarker of als and may be involved in the pathophysiology (73). a small clinical study showed that patients with als tended to have low vitamin d levels and that oral vitamin d supplementation with 2000 i.u./day was safe and may be of benefit (86).
there are a number of animal studies suggest that the endocannabinoid system is implicated in the pathophysiology of als (93–99). the cannabinoids themselves are all lipophilic and not soluble in water. in addition to pain and spasticity, there are other pharmacological effects of cannabis that may be useful for als patients. cannabinoids in the form of an aerosol in inhaled smoke or vapors are absorbed and delivered to the brain and circulation rapidly, as expected of a highly lipid-soluble drug. finally the cannabinoids may also be made in to a liniment and absorbed through the skin, although this is the least efficient mode of delivery. there is only 1 published trial of acupuncture in patients with als (173). chelation therapy is a medical procedure in which a chelating agent is administered to the patient with the objective of removing a specific heavy metal from the body. in fact, there is evidence to the contrary. there are no trials on the effect of energy healing in als patients. this model ignores the fact that patients are different in terms of how they want their information presented (208). inputs on alternative als therapies come from patients and families, either via face to face visits with clinicians that are part of the group, or via email or twitter (@alsuntangled).
two drugs for als, riluzole and edaravone, have been approved by fda for the treatment of als patients. therefore, als patients seek an effective therapy for treating the symptoms or delaying the progression of als.
based on this, we review the effects of complementary and alternative medicine (cam) in als animals or patients to verify the efficacy of cam in incurable diseases. the search keywords included amyotrophic lateral sclerosis, acupuncture, herbal medicine, traditional chinese medicine, cam, animals, and clinical study through electronic databases pubmed and google scholar from their inception until march 2019. in the als animal model, cam modulated the immune system to increase motor function by reducing the expression levels of neuroinflammatory proteins in the spinal cord. this review shows that cam may be useful for als treatment, but more evidence regarding the efficacy and molecular mechanisms is required to establish cam as a good therapy for the treatment of als patients.
some of the most commonly considered alternative therapies include special diets, nutritional supplements, cannabis, acupuncture, chelation and the use of cam therapy, including acupuncture, herbal medicine, and massage, yoga, relaxation therapy, and homeopathy has been popular for thousands of years in alternative treatments and therapies for als 1. diets and nutritional supplements 2. cannabis 3. acupuncture 4. chelation 5. energy healing., .
they are not meant as a cure, but may provide relief from symptoms and make day-to-day life more comfortable for people with als. complementary therapies include meditation, hypnosis, acupuncture, massage, and other physical and mental therapies used to relieve anxiety, stress, stiffness, pain, and discomfort. gentle, low-impact aerobic exercise such as walking, swimming, and stationary bicycling help by improving cardiovascular health, strengthening interest has focused on substances with antioxidant potential such as: vitamin e, carotenes, flavonoids, resveratrol, epigallocatechin gallate, these off-label treatments can come in the form of special diets, dietary supplements with vitamins, minerals, and herbs, or therapies such as acupuncture and, .
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