Cusack Protocol

The Cusack Protocol is a protocol of various nutritional supplements that can purportedly improve connective tissue integrity and some digestive symptoms in people with Ehlers-Danlos Syndrome. It was created Deborah Cusack, a patient with EDS.

Components

 * Polysaccharides:
 * Either 100% fractionally distilled Aloe vera or aloe vera juice capsules
 * or maitake mushroom
 * Lactobacillus rhamnosus GG (L-GG) - a probiotic (10-15 billion cfu)
 * Pyrroloquinoline Quinone (PQQ)
 * L-arginine
 * D-Ribose
 * Lion's mane (hericium erinaceus, a type of mushroom)
 * Diatomaceous earth (food grade DE) - a powdered fossilized algae)
 * Glucosamine chondroitin
 * Hyaluronic Acid
 * Astragalus Extract

Theory
The Cusack protocol aims to regenerate connective tissue and resolve mast cell disease symptoms. It is a treatment strategy that is expected to be continued in the long term, possibly indefinitely, rather than a cure for Ehlers-Danlos syndromes.

Evidence
Despite anecdotal reports of improvement, neither the protocol nor its components have ever been studied in EDS.

Risks, safety, and side effects
Risks are largely unknown due to lack of clinical trials and an absence of medical practitioners reporting on the effects of patients using the Cusack protocol. The Cusack protocol includes eight supplements, so side effects may result from any of these or from combinations of them.

Deborah Cusack has stated that some side effects will be experienced initially, and may last between one day and several weeks in EDS patients, which she refers to as the "healing curve" or a "healing crisis". Cusack states this includes stiff joints, aching muscles, and that fatigue, mild fever, nausea and headache may also occur.

A mast cell disease flare may also occur in patients with mast cell disease, according to Cusack. There is lack of information about the impact of the protocol on people with other illnesses in addition to EDS, or effects on people without EDS.

These is a lack of information about the safety and risks of taking these supplements with existing medications or other supplements.

Learn more

 * Our Family's Journey - Deborah Cusack's website
 * Cusack Protocol (slides) - Ehlers-Danlos Support Wilmington