Information on nutritional supplements people with ALS have been taking

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This is a list of supplements people with ALS have reported taking. Along with each supplement, its supposed pathways of functioning are given, along with typical dosages and potential side effects. The aim is to create a specific data page on each supplement, including links to scientific research articles etc.

Substance Means of functioning Possible synergies Potential side effects Form Typical dosage
5-HTP Serotonin upregulator, may help with lower motor neuron symptoms such as cramps and muscle spasms, may slow down neurodegeneration. May alleviate depression and improve sleep. Vitamin B6, (pyridoxal-5'-phosphate form may be more effective). Together with niahin may produce NADH? Risk for serotonin syndrome if many serotonin boosters are taken at the same time. Not together with green tea (EGCG, EGC) Capsule 100 mg, twice a day. Deanna protocol recommends 50 mg a day. For mood support 50-300 mg commonly mentioned.
Acetyl L-carnitine (ALCAR) Mitochondrial support, prolonged survival time for 23 month in this trial. Appears to increase the growth and repair of neurons, while protecting neurons from high levels of glutamate when combined with lipoic acid. Reduces neuromuscular degeneration in animal models. Probably more effective with alpha lipoic acid. L-carnitine without the acyl group is more bioavailable but unable to pass BBB; thus better for targeting muscles. If taken orally, may feed harmful gut bacteria. Capsule or powder 1 - 3 g a day, max. 0.5 g at a time
Alcohol (ethyl alcohol) Glutamate antagonist, GABA agonist, synergistic with glycine. Unsuitable for alcoholics, common alcohol risks and health problems; risk of addiction, worse sleep, chronic use has risk of depression and anxiety, burdens liver, high amounts may lead to accidents and injury. Liquid bewerages
Alpha lipoic adic (ALA) Na-R-ALA and R-ALA are more efficient forms of ALA. See R Alpha lipoid acid. Capsule
Alpha ketoglutarate (AKG) Krebs cycle support Capsule or liquid 300 mg every 1 hour
Arginine alpha ketoglutarate (AAKG) Krebs cycle support Arginine (in the form of 1:1 AAKG) increases bioavailability. Usually used in combination with AKG. Capsule 3 - 20 g a day, typical dosage is 3 x 6g
Baicalin VEGF upregulator, NF-kappab inhibitor, IL-6 downregulator (?) Capsule 400 mg a day
Benfotiamine Preferred lipophilic form of thiamine. Capsule
Berberine Anti-microbial, AMPK activator, anti-leaky gut May interact with microlide antibiotics such as azithromycin and clarithromycin at hERG channels on the heart, leading to serious cardiotoxicity. Excessive AMPK activation may induce TDP-43 mislocalisation. Possibly detrimental in SOD1 ALS. Contributes to muscle degradation. Capsule 0.9 - 2 g a day, max. 0.5 g at a time
Coconut oil / MCT oil By raising ketone levels, could theoretically help compensate for mitochondrial dysfunction and impaired energy production. Could slow progression simply by acting as a high calorie supplement that increases circulating lipids. Antibacterial, antiviral, antifungal and antiprotozoal. Stomach upset, diarrhea in large amounts. Gradual increase 1 tsp/day to minimize possible gastrointestinal side effects. Virgin coconut oil, avoid hydrogenated or otherwise chemically altered products. 1-9 Tbsp/day.
Curcumin Anti-inflammatory, HSP inducer, iron chelator Valproate potentiates curcumin's neuroprotective effect. Piperine or complexing with phosphatidylcholine (Meriva) improves otherwise poor bioavailability when taken orally. Slow release products exist. Consult a doctor first if you have problems with gallbladder. Capsule 400 mg to 3 g a day, depending on the formulation
Dexthromethorphan Anti-bulbar/pseudobulbar symptoms, Serotonin upregulator, Calcium channel inhibitor, NMDA antagonist Quinidine slows the breakdown of dextromethorphan in the body, improving its bioavailability. Liquid 20 mg dex + 10 mg quinidine twice a day
Dichloroacetate (DCA) Glycolysis inhibitor Severe, including peripheral neuropathy if taken too much or for too long. Powder 2 g a day
DMAE Increases acetylcholine production, antioxidant. Confusion, drowsiness, elevated blood pressure, insomnia Capsule 130 - 400 mg a day
European milk thistle extract Mitochondrial support, GSH production support, liver support Softgel 500 mg, once a day
Folic acid (folate) Lowers homocysteine. Synergy with vitamin B12. Folic acid refers to the oxidized synthetic compound used in dietary supplements and food fortification, whereas folate refers to the various tetrahydrofolate derivatives naturally found in food. Excessive intake of folic acid increases cancer risk and may mask detection of vitamin B12 deficiency and lead to a deterioration of central nervous system. To minimize risks use “5-methyltetrahydrofolate” (5-MTHF) supplements or obtain folate from food. Capsule of 5-methyltetrahydrofolate (5-MTHF) for folate.
GABA Can have a direct effect on spasticity. Capsule 250 mg, twice a day
Gastrodia elata Endothelin-1 downregulator Capsule
Ginger Fresh or root extract
Glutathione Pill, IV infusion
Idebenone Synthetic analogue of ubiquinone. Pill
Ibuprofen Anti-inflammatory (general) Stomach issues that do not vanish over time. Pill 200 mg, twice a day
Inosine Axon growth stimulation, anti-glutamate, rlevates uric acid (?) Capsule 500 mg, once a day
Leucine GDH activator Powder 1 g a day
Lion's Mane mushroom Nerve growth stimulation. Capsule, powder
Luteolin IL-6 inhibitor Powder, capsule 1 g a day
Magnesium Glutamate antagonist and GABA agonist. In high amounts Mg may cause loose stools or diarrhea. Mg oxide is notorius for poor absorption and causing loose stools. Capsule or powder. Mg taurate supposedly well-suited for ALS patients. Bisglycinate better than many other forms for intestinal tolerability. Citrate, orotate supposedly good. 200-1000mg as tolerated
Magnesium chloride (magnesium oil) Similar to other magnesium forms, except can be taken transdermally. Transdermal delivery supposedly corrects Mg deficiency faster and has no intestinal issues. Transdermal magnesium chloride (but not oral) synthesizes DHEA in human skin. Oily MgCl2-water, flakes for dissolving to water. Oil or flakes dissolved to warm water bath.
Magnesium L-threonate Supposedly gets magnesium past the BBB better than other magnesium supplements.
Magnolia bark extract Anti-anxiety, anti-bulbar/pseudobulbar symptoms, anti-inflammatory Enhances TNF induced apoptosis Capsule 30 mg, 2-4 times a day
Methylcobalamin (Vitamin B12) In cell culture studies, ameliorates oxidative stress, glutamate toxicity and apoptosis. High doses can inhibit DNA methylation. Lowers plasma homocysteine levels. Capsule, oral spray, injection 1-25 mg per day or 50 mg twice a week
N-Acetyl-cysteine (NAC) Glutathione synthesis precursor, can help thin mucous secretions in the oral cavity which may make swallowing easier. Capsule 600 mg, twice a day
Prevents TDP-43 misconfiguration
Niacin (vit. B3) Increases plasma homocysteine levels, Causes release of PGD2
Niacinamide (nicotinamide)
Nicotinamide riboside
Peony root extract HSP-70 inducer, anti-inflammatory. Sodium channel inhibitor, which makes it a promising therapeutic for lower motor neuron disease particularly. Usually taken with non-DG licorice, which enhances its effects. 600 mg, once a day
PharmaGABA A form of GABA, supposedly crosses BBB better than regular GABA.
Protandim Nrf2 activator According to Protandim advocating doctor 8 % of 18 000 people has had side effects; these include loose stools and rash. Agents that increase SOD levels such as Protandim could theoretically accelerate ALS progression. Tablet Usually 1 tablet (675 mg) daily, sometimes more
Pterostilbene Favorably regulates genes involved in the development of cancer, atherosclerosis, diabetes, and the system-wide inflammation that underlies a variety of age-related disorders. Similarities to resveratrol, but outperforms it in bioavailabity, far longer half-life, and penetrating the blood brain barrier. Supposed to work synergistically with resveratrol. Capsule, a cup of blueberries 20 mcg 1 capsule 0.25 mg
Pu-erh tea Extract may prevent the onset of FET family protein-associated neurodegenerative diseases and delay the progression of ALS by inhibiting the cytoplasmic aggregation of FET family proteins.
PQQ Mitochondrial support.
Pycnogenol antioxidant, protective effects against glutamate excitotoxicity, increased the levels of SOD produced in an animal study
R Alpha Lipoic Acid (R-ALA) Mitochondrial support, increase intracellular levels of glutathione, antioxidant, chelates metals, protects cells against glutamate-induced excitotoxicity. Na-R-ALA is the sodium salt of R-alpha lipoic acid, and is more bioavailable than unmodified R-ALA. Capsule 300 mg, once a day
Resveratrol AMPK activator, Inhibits PGE2, SIRT1 activator Leucine and HMB significantly increase resveratrol's ability to activate Sirt1, Sirt3 and AMPK. Excessive AMPK activation may induce TDP-43 mislocalisation. Possibly detrimental in SOD1 ALS. May increase toxicity of riluzole. Depletes NAD. Capsule 50 - 400 mg a day. NAD supplementation should be considered esp. on higher dosages.
Selenium Glutathione synthesis Pill 0.1 mg, once a day
Serine (L-serine) May prevent incorporation of toxic BMAA into human protein in synthesis.
Sodium benzoate Ammonia scavenger Needs arginine supplementation to be fully effective Powder 2-4 g a day (?)
Spirulina (blue-green algae) Reduced inflammatory markers and neuroprotective support for dying motor neurons in mice. Nutrition dense food. May contain neurotoxin BMAA, quality control varies by producer.
Taurine Stabilizes Ca homeostasis
Trimethylglycide (TMG) Homocysteine suppression Capsule 750 mg, twice a day
Tomatidine Reduces ATF4 activity in aged skeletal muscle. ATF4 is a transcription factor that alters gene expression in skeletal muscle, causing reduction of muscle protein synthesis, strength, and mass. Green tomatoes
TUDCA (tauroursodeoxycholic acid) Anti-apoptotic, may inhibit MMP-9 activation. Capsule 1 g, twice a day
Ubiquinone (COQ-10) Mitochondrial support, antioxidant 100 mg or more
Ubiquinol Mitochondrial support, antioxidant Life extension Foundation claims that shilajit doubles levels of CoQ10 in mitochondria. Ubiquinol is a step further in biochemistry, and usually with better biovailability than ubiquinone. Capsule 100 mg, once a day
Ursodiol (a.k.a. UDCA, ursodeoxycholic acid) Taurine conjugate form TUDCA may be more effective.
Ursolic acid Reduce muscle atrophy and to stimulate muscular growth in mice.
Vitamin C Antioxidant
Vitamin D3 Anti-inflammatory (general), calcium regulator. Can improve compromised human muscular ability and increase muscle size, supported by loss of motor function and muscle mass in animals following VDR knockout, as well as increased muscle protein synthesis and ATP production following vitamin D supplementation. Attenuates hypoxic brain damage in vivo and reduces neuronal lethality of glutamate insult in vitro. "In sum, evidence demonstrates that vitamin D, unlike the antiglutamatergic agent Riluzole, affects multiple aspects of ALS pathophysiology and could provide a greater cumulative effect." (Source) 5000 IU (125 mcg)
Vitamin K1 Calcium management
Vitamin K2 In Drosophila mitochondrial dysfunction was rescued by vitamin K2 that serves as a mitochondrial electron carrier, helping to maintain normal ATP production. May protect from vitamin D3 toxicity if high D3 disages are used. Supposedly synergy with vitamin D3.
Zinc gluconate Copper inhibitor Copper deficiency if taken in excess. GDH downregulation? Capsule, gluconate is the form preferred in treating Wilson's disease. 25 mg, three times a day