Additional pharmacologic studies of LDN are needed to clarify its mechanisms of action. Some of its proposed mechanisms such as immunomodulation and neuroprotection could potentially be useful in ALS. However, there are no convincing data thus far to suggest that this is the case, and some limited data even raise a theoretical potential for a harmful effect. The benefits reported by a small Patients Like Me cohort are not consistent across participants, nor are they objectively verifiable. A small pilot study of a drug with similar mechanisms found no objective benefits in patients with ALS. Although reported costs are not exorbitant, there are reported and potential side-effects including liver toxicity. ALSUntangled does not recommend LDN use by patients with ALS at this time.
Risks (harms that occurred on this treatment)
The Hickey Wellness Center
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.