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The Cusack Protocol

Founded by Deborah Cusack in 2009, the Cusack Protocol is a protocol of supplements meant to alleviate the symptoms of Ehlers Danlos Syndrome. Learn more about it here. Deborah Cusack and her 4 daughters as well as her grandchildren have benefitted greatly from this Protocol, which is why she shared it with the world for free. She does not experience any financial benefit from this protocol. No research has established the efficacy of this treatment yet; however, there are over 30,000 people in the Cusack Protocol facebook group and many anecdotal reports can be found there of substantial improvement on this protocol of supplements. 

Dosing Tips:
  • Everyone is different but your body will tell you what dose is right for you. Reducing gluten from the diet enhances the effects of the supplements and speeds recovery.
  • It is strongly recommended that you join the Cusack Protocol Facebook group before trialing any of the supplements below in order to learn as much as you can about others experiences prior to starting.
  • Begin one supplement at a time and start low and go slow, preferably using as small an amount of the new supplement as possible. Choose ONLY reputable brands of supplements.
  • It is wise to only begin this protocol when and only when your MCAS symptoms are under better control.
  • If you do choose to do this protocol, make sure to inform your medical team about what you are taking and in what dosage so they can check for interactions with your prescription medication.
  • Know that there are healing curves when beginning most of these; meaning, that in the short term, your symptoms can get worse before they improve more permanently. 
  • You may not need all the supplements in this protocol. Children for example typically take only the St. Georges Aloe as they do not need as many layers of repair as adults. 
  • Also remember that this is not a cure, but a protocol to manage symptoms until a cure is found.

The Cusack protocol consists of:
  1. Probiotic-- Lifeway Kefir or L-GG also known as L-Rhamnosus, single strain, which down-regulates histamine and MCAS symptoms (ok to continue to take anti-histamines or MCAS medicine while on protocol)
  2. PQQ (20mg), both of which prepares the GI tract for the introduction of other supplements
  3. Fractionally Distilled St Georges Aloe liquid or Maitake Mushroom capsules
    1. Most zebras say that the aloe or mushroom is a joint tightening agent, so it is important that tethered cord has been ruled out before trialing. If you do not tolerate the St. Georges, then try the Maitake.
  4. D-Ribose-- Pure powder, 325mg daily
  5. L-Arginine-- Low dose, 250mg-500mg daily (if viral load, add Lysine at opposite end of the day)
  6. Lions Mane-- Freeze dried capsule, 1 daily
  7. Food Grade DE- Diatomaceous Earth, 1/4 tsp to 2 TBSP daily
  8. Glucosamine Chondroitin, 400-500mg daily

Here is Savita Sandhu, Registered Dietitian's perspective on the Cusack Protocol