Information on nutritional supplements people with ALS have been taking
From MyWiki
This is a list of supplements people with ALS have rep orted taking. Along with each supplement, its supposed pathways of functioning are given, 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). According to the Deanna protocol together with no-flush niacin (or niacin?) 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 by 23 months 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 certain 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. For some people may cause racing thoughts or insomnia if taken on afternoon or evening. | 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 beverages | |||
| Alpha lipoic adic (ALA) see R Alpha Lipoic Acid (R-ALA). | ||||||
| Alpha ketoglutarate (AKG) | Krebs cycle support | Capsule or liquid | Deanna protocol recommends 300 mg every 1 hour while awake. | |||
| 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, (Deanna protocol recommends 18g) typical dosage in Deanna protocol is 3 x 6g | ||
| Ashwagandha (withania somnifera) | Reduces TDP-43 and SOD1 mislocalisation and aggregation in an ALS mouse models. May reduce anxiety. Reduces CRP. Decreases cortisol (anti-stress) and adaptogenic. Decreases total cholesterol. Minor decrease of blood glucose and pressure. Minor antidepressant effect. | Nrf2/ARE inducers (curcumin or silymarin from milk thistle) for inducing HO-1 activity and antioxidant effects. GABAergic anxiolytics (including alcohol) - anti-anxiety effect is even synergistic with alcohol. | Root powder, root extract (brands: KSM-66, Sensoril) powder and capsules | Dosage of non-extract root powder: 6,000mg a day usually divided into three doses of 2,000mg. | ||
| Baicalin | VEGF upregulator, NF-kappab inhibitor, IL-6 downregulator (?) | Capsule | 400 mg a day | |||
| Benfotiamine | Preferred lipophilic form of thiamine (vitamin B1). | 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 | ||
| Biotin (vitamin B7) | No significant side effects reported, but valproate and long-term antibiotics use may cause biotin deficiency. | 300 mg a day | ||||
| 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. | ||
| Colloidal silver | According to "Eric is Winning" -protocol, colloidal silver is a natural antibiotic and has been known to effectively eliminate unwanted parasites from colon. Also suggested by EIW that most people, including 85% of all PALS, have excessive bad bacteria, fungus, and/or mycoplasmas in their colons. | |||||
| Creatine | Krebs cycle support. | Powder | 5-10g per day | |||
| Cu-ASTM | Copper transporter, supposedly able to release its copper specifically only in CNS and spine. Halted disease in SOD1 mice. | dark powder in capsule | 24 mg a 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 (e.g. Meriva-SR). | Consult a doctor first if you have problems with gallbladder. Has been shown to inhibit proteasome within cell, which may lead to increase of misfolded proteins. | Capsule | 400 mg to 3 g a day, depending on the formulation | |
| D-ribose | May support Krebs cycle. | |||||
| Dexthromethorphan | Anti-bulbar/pseudobulbar symptoms, Serotonin upregulator, Calcium channel inhibitor, NMDA antagonist | Quinidine slows the breakdown of dextromethorphan in the body, improving its bioavailability. | May cause dizziness or drowsiness. Do not drive, use machinery, or do any activity that requires alertness until you are sure you can perform such activities safely. Avoid alcoholic beverages. MAO inhibitors may cause a serious (possibly fatal) drug interaction. Avoid taking isocarboxazid, methylene blue, moclobemide, phenelzine, procarbazine, rasagiline, selegiline, or tranylcypromine with dextromethorphan. MAO inhibitors should also not be taken for two weeks before. Other interactions are possible. | Liquid | 20 mg dex + 10 mg quinidine twice a day | |
| Dichloroacetate (DCA) | Glycolysis inhibitor, reduces PDH phosphorylation | Severe, including peripheral neuropathy if taken too much or for too long. In tumor cells, shifting metabolism towards oxidative phosphorylation increases apoptosis - what happens in ALS affected cells is unknown. | Powder | 2 g a day | ||
| DMAE | Increases acetylcholine production, antioxidant. | Confusion, drowsiness, elevated blood pressure, insomnia | Capsule | 130 - 400 mg a day | ||
| EGCG (epigallocatechin-3-gallate) | Natural iron and copper chelator. Oral administration to G93A-SOD1 mutant transgenic mice, beginning from a pre-symptomatic stage, significantly prolonged the symptom onset, delayed the onset of disease and extended life span. Additionally, increased the number of motor neurons, diminished microglial activation, reduced immunohistochemical reaction of NF-kappaB and cleaved caspase-3, as well as reduced protein level of iNOS and NF-kappaB in the spinal cords of G93A-SOD1 mutant transgenic mice. In cultured rat spinal cord explants, EGCG protected motor neurons against THA-induced toxicity, which was accompanied by regulation of glutamate levels in the synaptic cleft, and decreased tissue levels of lipid peroxides. | Capsule | ||||
| 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. | GABA is a chief neurotransmitter in the brain and may adversely react with any neurally active prescription medication or anti-depressants. (Source). Changes in KCC2 channel density may cause GABA to turn excitatory in the cells affected by the disease. | Capsule | 250 mg, 2 times a day (Deanna protocol recommendation) | ||
| Gastrodia elata (Gastrodin) | Endothelin-1 downregulator | Capsule | ||||
| Ginger | According to Examine.com, due to an anticoagulant effect, ginger should not be paired with pharmaceutical (prescription) drugs with the same effect such as Warfarin, and possibly NSAIDs such as Aspirin. May cause gastrointesinal discomfort. | Fresh or root extract | ||||
| Glutathione | Antioxidant. | Pill, IV infusion, liposomal liquid | ||||
| Glycine | Powder | |||||
| Idebenone | Synthetic analogue of ubiquinone. | Pill | ||||
| Ibuprofen | Anti-inflammatory (general) | May cause e.g. upset stomach, internal bleeding, nausea, vomiting, headache, diarrhea, constipation, dizziness, drowsiness, raise blood pressure, cause allergic reaction, or rarely cause serious (possibly fatal) liver disease. Many other possible serious side effects and drug interactions. (Source: WebMD) | Pill | 200 mg, twice a day | ||
| Inosine | Axon growth stimulation, anti-glutamate, elevates uric acid (?) | May make gout worse. (Source: WebMD) | 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, TNF-α suppressor, reduces Ca2+ influx | If accompanied with low-carbohydrate diet, may result into harmful weight loss. | Powder, capsule | 1 g a day | ||
| Magnesium | Glutamate antagonist and GABA agonist. | In some people, magnesium may cause stomach upset, nausea, vomiting, diarrhea, and other side effects. In very large amounts, possibly unsafe; Large doses may cause Mg build up in the body, causing serious side effects including an irregular heartbeat, low blood pressure, confusion, slowed breathing, coma, and death. Drug interactions exist, e.g. with antibiotics and muscle relaxants. (Source: WebMD) | Capsule or powder. Mg taurate supposedly well-suited for ALS patients. Bisglycinate better than many other forms for intestinal tolerability. Citrate, orotate supposedly have good uptake. | 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 | Can slow down the central nervous system, concern that it might slow down the nervous system too much when combined with anesthesia and other medications used during and after surgery. May slow blood clotting and cause bleeding during and after surgery. Interactions with alcohol and sedatives. (Source: WebMD). 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. Ultra-high dose (25mg or 50mg i.m. twice weekly) for the patients who were given diagnosis of ALS within 12 months after the onset, the event-free survival was prolonged up to 600 days and ALSFRS-R changes were smaller in active group than in placebo. | Unsafe at least in following medical conditions: High numbers of red blood cells (polycythemia vera), abnormal red blood cells (megaloblastic anemia), Leber’s disease (a hereditary eye disease), allergy or sensitivity to cobalt or cobalamin, post-surgical stent placement, pregnancy or breast-feeding. (Source: WebMD) | Capsule, oral spray, injection | 1-25 mg per day or 50 mg twice a week | ||
| Melatonin | In ALS, the most promising effects of melatonin are those of blocking apoptotic pathways and reducing oxidative damage. The mechanisms of melatonin antiapoptotic effects are not completely clear, although the mitochondria have been identified as its target. | Can cause some side effects including headache, short-term feelings of depression, daytime sleepiness, dizziness, stomach cramps, and irritability. Do not drive or use machinery for four to five hours after taking melatonin. (Source:WebMD) | Capsule | 3-5 mg per day | ||
| MitoQ | Synthetic equivalent to ubiquinol, accumulates selectively into mitochondria. | Capsule | 10 mg, once a day | |||
| N-Acetyl-cysteine (NAC) | Glutathione synthesis precursor, can help thin mucous secretions in the oral cavity which may make swallowing easier. Prevents TDP-43 misconfiguration. Lowers plasma homocysteine levels. | May cause upset stomach, diarrhea, fatigue, skin rash. Extremely high doses (60 to 100 times normal dose) have caused liver damage in animals. May be unsafe with asthma or liver or kidney disease. (Source: WebMD) | Capsule | 600 mg, twice a day | ||
| Niacin (vit. B3) | Increases plasma homocysteine levels, Causes release of PGD2 | |||||
| Niacinamide (nicotinamide) | Consumes betaine, leading to increased plasma homocysteine level. | |||||
| Nicotinamide riboside | NAD+ precursor, thus preventing astrocyte toxicity. | 100 - 500 mg a day | ||||
| 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. | GABA is a chief neurotransmitter in the brain and may adversely react with any neurally active prescription medication or anti-depressants. (Source) | ||||
| PQQ | Mitochondrial support. | "Chronic toxicity to kidneys and liver may be achieved at a relatively low dose, although acute death requires a very high and unpractical dose. Until more evidence surfaces, it would be prudent to avoid superloading" (Source: Examine.com) Promoting fission of faulty mitochondria may be harmful. | ||||
| Probiotics | Specific strains may heal leaky gut. Generic health benefits. Restore healthy bacteria in colon after antibiotics use. | |||||
| 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. | |||||
| Pycnogenol | antioxidant, protective effects against glutamate excitotoxicity, increased the levels of SOD produced in an animal study | |||||
| Quercetin | ||||||
| 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. | May cause nausea and itching. In rat studies with toxic doses, ALA has increased oxidation levels (via hydroperoxide) in the organs it acts in, and has taken its metal-chelating abilities to the extreme and induced mineral deficiencies. These effects were seen at the human equivalent of 3-5g of ALA a day. (Source: Examine.com) | 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. | Up to 15 g twice daily | ||||
| 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 | |||||
| Trimethylglycine (TMG) (betaine) | Homocysteine suppression, antioxidant. | 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, enhances GSH. | 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. Body may have decreased capability converting ubiquinone into ubiquinol after the age of thirty. | May have a rebound effect if discontinued quickly after long use; tiredness, weakness, blood pressure might increase marginally during this period for about a week. | 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 E (tocopherol & tocotrienol complex) | Antioxidant, in some research has been shown to prevent ALS. | |||||
| 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) | "Toxicity from vitamin D is mediated by altering calcium metabolism, which is potentially lethal. Doses should not exceed 10,000IU daily unless supervised by a medical professional." (Source: Examine.com) | Pills, oral spray | 5000 IU (125 mcg), blood tests confirmation for levels and safety. | ||
| Vitamin K1 | Calcium management | Unsafe with at least following medical conditions: diabetes, kidney disease, liver disease. Do not take if using warfarin (Coumadin), might decrease warfarin effectiveness. (Source: WebMD). | ||||
| 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 dosages are used. | Supposedly synergy with vitamin D3. | Unsafe with at least following medical conditions: diabetes, kidney disease, liver disease. Do not take if using warfarin (Coumadin), might decrease warfarin effectiveness. (Source: WebMD). Induces mitochondrial apoptosis by interacting with Bak. | |||
| 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 | ||
