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 Vitamin B6 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
Acetyl L-carnitine (ALCAR) Mitochondrial support, prolonged survival time for 23 month in this trial Possibly 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
Alpha ketoglutarate (AKG) Krebs cycle support Arginine (in the form of 1:1 AAKG) increases bioavailability. Capsule 3 - 20 g a day
Baicalin VEGF upregulator, NF-kappab inhibitor, IL-6 downregulator (?) Capsule 400 mg a day
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. 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
Gastrodia elata Endothelin-1 downregulator Capsule
Ginger Fresh or root extract
Ibuprofen Anti-inflammatory (general) Stomach issues that do not vanish over time. Pill 200 mg, twice a day
Inosine Axon growth stimulation, Anti-glutamate, Elevates uric acid (?) Capsule 500 mg, once a day
Leucine GDH activator Powder 1 g a day
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 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 600 mg, once a day
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
Pu-erh tea 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.
R Alpha Lipoic Acid (R-ALA) Mitochondrial support. 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 highes dosages.
Selenium Glutathione synthesis Pill 0.1 mg, once a day
Sodium benzoate Ammonia scavenger Needs arginine supplementation to be fully effective Powder 2-4 g a day (?)
Spirulina (blue-green algae)
Taurine
Trimethylglycide (TMG) Homocysteine suppression Capsule 750 mg, twice a day
Ubiquinol (COQ-10) Mitochondrial support Life extension Foundation claims that shilajit doubles levels of CoQ10 in mitochondria. Capsule 100 mg, once a day
Vitamin D Anti-inflammatory (general)
Vitamin K Calcium management
Zinc gluconate Copper inhibitor Copper deficiency if taken in excess. GDH downregulation? Capsule 25 mg, three times a day