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 case reports

Lunasin

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Lunasin has interesting mechanisms of action that might be useful in treating ALS, and it appears reasonably safe although some forms of it are expensive. While some PALS have reported improvements on lunasin, we have thus far found only one in which we were able to independently validate these improvements. This patient had atypical features for ALS including a history of myasthenia gravis, which can produce weakness that improves spontaneously. At this time there is not enough evidence to recommend that PALS take lunasin. A reasonable next step would be a small pilot trial of lunasin with validated ALS diagnoses and outcome measures.

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Dean Kraft, Energy Healer

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In our opinion, Dean Kraft’s energy healing lacks a plausible scientific rationale. The experiments listed on his website as proof of his being able to emit some sort of energy have never been published in a peer-reviewed journal and thus cannot be properly validated. The strongest evidence for his being able to heal ALS comes from the case report of Nelda Buss who appeared to have ALS, and while under the care of Dean Kraft and a physical therapist, recovered nearly completely. Spontaneous remissions in ALS are very rare, but certainly have been reported before. One case cannot be considered proof of a specific treatment effect. At a minimum, a small well- designed case series would be necessary. We would be happy to work with Dean Kraft to design such a study if he is interested. Without more evidence, ALSUntangled cannot support this expensive alternative treatment for ALS.

The Hickey Wellness Center

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The Hickey Wellness Center infrastructure is clean and professional. Dr. Hickey has a good bedside manner, and clearly believes in his protocol (indeed he himself is on it, and has had his own fillings removed). However, at this time, we are not convinced of a link between heavy metal toxicity and ALS. The metal testing performed in the Center is un-interpretable given the lack of ‘normal’ post- chelation metal ranges. Similarly, concerning are the lack of validated diagnoses, an appropriately detailed informed consent form, a consistent protocol across patients, objective outcome measures, or even adverse event tracking. As a result of these problems, ALSUntangled cannot currently condone most of the Hickey Wellness Center’s approach toward ALS. We do endorse two of Dr. Hickey’s practices: stressing hope, and once all the important information about an alternative therapy has been provided, respecting a patient’s wish to pursue it even if it is against our advice.