ALS Untangled™

ALSUntangled™ reviews alternative and off label treatments (AOTs), with the goal of helping people with ALS make more informed decisions about them.

Patient trials

Butyrates

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Butyrates have plausible mechanisms for slowing ALS progression and positive pre-clinical studies. One trial suggests that sodium phenylbutyrate (NaPB) in combination with Tauroursodeoxycholic acid (TUDCA) can slow ALS progression and prolong survival, but the specific contribution of NaPB toward this effect is unclear. Butyrates appear reasonably safe for use in humans. Based on the above information, we support a trial of a butyrate in PALS, but we cannot yet recommend one as a treatment.

https://www.tandfonline.com/doi/pdf/10.1080/21678421.2022.2045323

Ketogenic Diets

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Ketogenic diets have plausible mechanisms for treating ALS. One flawed preclinical study and two PatientsLikeMe participants reported benefits; these were not independently verified. Two other PatientsLikeMe participants and one patient under
the care of an ALSUntangled investigator did not show benefits. A trial of a ketogenic diet was only able to enroll a single patient and their experience cannot be interpreted due to the lack of any control group. We hope to see another trial of a ketogenic diet in people with ALS. Until then, given the frequent side effects, we do not advise such diets for the treatment of ALS

Melatonin

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Melatonin has plausible mechanisms, some positive (and some negative) pre-clinical data, and two case reports in which it was part of a cocktail of treatments associated with recovery of lost motor function. As we have stated previously, there are
multiple possible explanations for cases like these. There was also a very small, flawed retrospective study suggesting that PALS taking it progressed more slowly and lived longer than PALS were not taking it. Melatonin appears safe at high doses, but evidence is lacking for a proven benefit in slowing disease progression in ALS. Furthermore, an optimal dose and route of administration have not been established. Based on this data, a pilot trial of melatonin in PALS would be reasonable, but we cannot yet recommend it as an ALS treatment.

Light Therapy

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Light therapy has not yet been convincingly shown to help people with ALS. However, at specific wavelengths and energy densities, LT appears safe and has theoretically plausible mechanisms. There is a single case report suggesting benefits for light therapy in ALS, but it contains in sufficient detail to independently confirm diagnosis or treatment benefit. Further studies are needed to determine whether LT is useful for people with ALS, and via what specific protocols.

Proprionyl-L-Carnitine

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There are good theoretical mechanisms for carnitines, some pre-clinical evidence for LC and ALCAR, and a single clinical trial that suggested ALCAR could slow disease progression in PALS. All three carnitines appear to be well-tolerated, generally safe and inexpensive. We believe that there is a need for future clinical trials of carnitines in PALS to further elucidate their efficacy. Until there is further data, we cannot endorse any of these supplements as a definite way to slow ALS progression; however, oral ALCAR at 1000mg three times daily (3000 mg total daily dose) appears to be a theoretically promising supplement available for PALS whom would like to self-experiment.

LEAP2BFIT

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Many ingredients contained within LEAP2BFIT could, at least in theory, be beneficial in ALS. Some of these ingredients have supporting animal or human studies. However, it is unknown if these ingredients are being provided in therapeutic quantities since the dosages are not disclosed. Furthermore, it is impossible to know the net positive or negative effect of so many ingredients without carefully testing the combination. Based on the above discussions, we do not currently recommend LEAP2BFIT as a way to slow, stop, or reverse ALS.

Vinpocetine

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Vinpocetine has several plausible mechanisms by which it could slow ALS progression. There are two PALS online who reported improved motor functions on supplement cocktails containing Vinpocetine, but many other PALS have had no
benefits. Serious side effects from Vinpocetine are rare and it is inexpensive. We support further study of Vinpocetine in ALS, but our group was split on what the next step should be; some were in favor of a study in a pre-clinical ALS model and others were in favor of a small human trial to confirm its benefit on cramps (7) and to explore whether it is safe, tolerable and might slow disease progression.

Anti-fungals

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It is unknown if fungi exist in the brain of PALS. If they do exist, it is unknown if they have any pathogenic effect, and unknown if antifungal drugs would modify ALS disease progression. There are no pre-clinical ALS model studies, verified ALS cases, or ALS clinical trials to suggest that antifungals would be of any significant benefit to PALS, and these medications can cause harm. At this time, we strongly discourage PALS from taking antifungal drugs for their ALS disease. We hope in the future that independent laboratories will look for fungi in the CNS of PALS using more appropriate experimental methods.

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