Cusack Protocol | EDS Dietitian’s Guide

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Are you curious about the Cusack Protocol for Ehlers-Danlos Syndrome (EDS)?

 

Maybe you heard about the Cusack Protocol on Facebook, but aren’t quite sure if it’s legit.

 

People with hypermobility are always looking for ways to feel better…but is the Cusack Protocol the right way to go?

 

This article will explain what the Cusack Protocol is plus walk through what a Registered Dietitian that specializes in EDS thinks about it.

 

Cusack Protocol

 

What is the Cusack Protocol?

The Cusack Protocol is a combination of various supplements that are anecdotally touted to reduce the symptoms of and even treat Ehlers-Danlos Syndrome, which is a type of connective tissue disorder.

 

Who created the Cusack Protocol?

Deborah Cusack, a mother with Ehlers-Danlos Syndrome, created the Cusack Protocol in an attempt to help her children get relief from the health conditions associated with EDS like muscle pain, hypermobility, and dysautonomia. Supposedly, she took to the internet to find supplements that “regenerate and maintain connective tissue”.

 

Who uses the Cusack Protocol?

People with Ehlers-Danlos Syndrome and hypermobility may come across this protocol in Facebook support groups or other social media platforms and be interested in trying it out. People are always looking for ways to manage their symptoms on their own because there are no treatment options for EDS. It makes sense that people with fatigue, pain, joint dislocations, and GI symptoms want to feel better by any means necessary, right?

 

Keep reading to see if a dietitian with EDS thinks it’s a good idea to try the Cusack Protocol.

 

Cusack Protocol Supplements

Supplements listed in the Cusack Protocol include distilled aloe vera juice, maitake mushroom capsules, certain probiotic strains like L. rhamnosus, pyrroloquinoline quinone (PQQ), l-arginine, d-ribose, lion’s mane mushroom, diatomaceous earth (DE), and glucosamine chondroitin.

 

Supplements in the protocol and their supposed roles:

  • Distilled aloe vera juice or maitake capsules to regenerate the collagen in tendons, ligaments, craniocervical tissues, etc.
  • Probiotics to regenerate mast cells and the immune system
  • PQQ to regenerate epithelial cells in the digestive system
  • L-arginine to regenerate endothelial cells in the venous system
  • D-ribose to regenerate nerve and Schwann cells
  • Lion’s mane to regenerate the myelin sheath of nerve cells in the central nervous system
  • Diatomaceous earth to treat arthritis, get rid of heavy metals, and kill bad bacteria
  • Glucosamine Chondroitin to regenerate teeth dentin

 

This graphic lists the supplements in the Cusack protocol, including a probiotic, PQQ, lions mane, and distilled aloe vera juice.

 

A dietitian’s concerns about the Cusack Protocol for EDS

 

Is it safe?

Safety is my primary concern as a healthcare professional. Since this protocol was not developed by a healthcare professional or scientist, there has been no testing to determine whether taking all of these supplements together or in combination with medications and other supplements is safe.

 

Even though all of the supplements listed in the protocol can be purchased over the counter, it doesn’t mean that they are all extremely safe. There can still be risks and unintended consequences with supplements.

 

There is potential risk in trying the Cusack protocol because it hasn’t been tested for safety.

 

Is it effective?

As a registered dietitian, I only advise my patients to try evidence-based ways to improve their health. We actually have no idea if the Cusack Protocol is effective because it has never been incorporated into a high-quality scientific study.

 

While there are anecdotal reports of people feeling better after trying the protocol, it’s impossible to know if this is due to the placebo effect, other lifestyle changes, or the supplements themselves.

 

A placebo-controlled trial is the best way to prove whether or not certain supplements actually lead to the desired health outcomes, and this hasn’t been done for the Cusack Protocol.

 

There is currently little reason to believe that these supplements truly “regenerate” body tissues and effectively treat EDS.

 

Graphic showing someone shrugging their arms while wondering if the Cusack protocol is safe or effective.

 

Talk to your doctor if you are going to try the Cusack Protocol

Always talk to your doctor prior to starting any new supplements to ensure they won’t interact with other medications or supplements that you are already taking. Your doctor can also help you determine if it’s safe to try certain supplements. They can also provide proper dosage recommendations.

 

How people with EDS should use supplements

 

Prevent and address specific nutritional deficiencies

As a registered dietitian, I think the main role of supplements is to help prevent and address essential nutrient deficiencies.

 

People with EDS often have food intolerances, uncomfortable GI symptoms, or fatigue that impact their ability to get the nutrition they need. Over time, this can lead to certain nutrient deficiencies.

 

This is where supplements can come in handy!

 

If one of my patients has an iron deficiency but is having a hard time getting extra iron in their diet, an iron supplement can help them bring their iron levels back to normal so they can feel better faster.

Reduce some symptoms associated with EDS

While there is no research to back up the Cusack Protocol itself, there are some supplements that have been proven to help with some symptoms that people with EDS commonly experience.

 

For example, many people with EDS experience constipation. Psyllium husk fiber is a supplement that has been scientifically proven to be effective in relieving constipation.

 

While no supplements have been proven to treat EDS directly, there are hundreds of supplements that can potentially assist with symptom management.

 

 

In coordination with their healthcare team to ensure proper safety

People with EDS should only include supplements in accordance with their healthcare team’s recommendations to ensure proper safety.

 

Graphic showing how people with EDS should use supplements: to address nutrient deficiencies, to manage some symptoms, and in coordination with their healthcare team's recommendations

 

Conclusion

The Cusack Protocol is a combination of supplements that are anecdotally touted to reduce symptoms and even treat Ehlers-Danlos Syndrome (EDS), but there is no scientific evidence to support its effectiveness. While some supplements may help with some EDS symptom management, it is important to talk to a doctor before trying any new supplements to ensure safety and proper dosage recommendations.

 

As a registered dietitian, I do not recommend the Cusack Protocol because it has not been proven to be safe or effective.

 

However, I do recommend certain evidence-based supplements for EDS patients on an individualized basis.

 

Are you looking for guidance from a Registered Dietitian? I help patients via group sessions and my Oh My GI! on-demand course.

1 thought on “Cusack Protocol | EDS Dietitian’s Guide”

  1. How do we get the scientific community to run the studies to test the efficacy and safety? How do we push for this? It is a living nightmare to watch your loved one go through this. I am astonished at the number of people in our support group and the numbers are growing every day. This is a horrible and unfortunately, often invisible, affliction. Medical professionals tell those who suffer that it’s all in their heads, or that they are just lazy. My daughter would like nothing more than to turn the clock back to when she was working full time earning good money, engaged to be married, hiking in national parks, and able to pet her dog without us helping to prop the dog up onto her bed where she can reach him. Thank you for writing this article. Every time EDS is mentioned helps the effort!

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