A groundbreaking nutritional therapy called the Deanna Protocol shows promise as a way to manage amyotrophic lateral sclerosis (ALS), otherwise known as Lou Gehrig’s disease.
In an exclusive interview Aug. 13, Deanna Tedone-Gage, a director of the ALS foundation Winning the Fight, said a natural, alternative metabolic therapy called the Deanna Protocol can slow the progression of ALS and prolong life in ALS patients.
Deanna was diagnosed with ALS in 2008 at the age of 30 but has been managing the disease with the Deanna Protocol, a therapy developed by her father, retired orthopedic surgeon Dr. Vincent Tedone.
The Deanna Protocol involves using a variety of supplements to enhance the metabolic health and function of the cells damaged in ALS. Dr. Tedone identified four supplements as key components of the Deanna Protocol: arginine alpha ketoglutarate (AAKG), ubiquinol (CoQ10), nicotinamide adenine dinucleotide (NADH), gamma amino butyric acid (GABA).
ALS is a neurodegenerative disorder characterized by progressive muscle paralysis and early death. There is no cure, and the prognosis is bleak: On average, ALS patients live about three years after diagnosis, and less than five percent of patients survive past 10 years. Thanks to the protocol developed by father, Deanna is thriving today, six years after her diagnosis.
Some experts say a low-carb Paleo style can manage ALS. The Paleo diet is an alcohol-free diet that emphasizes high-quality animal proteins, healthy fats, low-starch vegetables and fruits, and excludes gluten, sugar, dairy, legumes and processed foods. It has been shown to have a number of therapeutic benefits, including managing multiple sclerosis.
Previous research indicated the low-carb, high-fat ketogenic diet can also manage Lou Gehrig’s disease, but the results of the Deanna Protocol were superior to that seen with the ketogenic diet, which produces a beneficial effect in motor function but not survival.
Tedone said the ketogenic diet did not work well for her, but a healthy diet that emphasizes whole, unprocessed foods does. “I try to eat meat from grass-fed, free-range animals,” she said. “I stay away from food that is treated with hormones and chemicals when I can and I try my best to eat organic fruits and vegetables when warranted. Basically, I do my best to eliminate toxins from my diet.”
Tedone said the Deanna Protocol is easy to follow. “The Deanna Protocol involves taking six supplements,” she said. “It was made even easier since Simplesa developed a powder for the Deanna Protocol that contains all but two supplements in the Deanna Protocol. I take the powder three times a day, plus the two other supplements that aren’t included in the powder, and I’m done.”
Feedback from ALS patients using the Deanna Protocol is positive, with little, if any, side effects reported. In a recent study, 80 percent of the 40 ALS patients who implemented the Deanna Protocol demonstrated slowed or stalled progression of symptoms by objective measurement (ALSFRS-R scores).
More research needs to be done to determine optimal dosing and composition of the metabolic supplement in the Deanna Protocol, but Tedone is encouraged by the dramatic improvements she has seen in her own condition.
Current Standard of Care Is a Drug With Unpleasant Side Effects
The Deanna Protocol has given hope to thousands of people who are battling ALS. The current standard of care for ALS is the drug Rilutek (riluzole). Rilutek does not cure ALS, but may delay progression of the disease in some patients.
But even in the best-case scenario, it only extends life by two months and produces a number of side effects, including nausea, headache and drowsiness.
Dr. Dominic D’Agostino, who conducts research on the Deanna Protocol, is also encouraged by the beneficial effects of the Deanna Protocol. D’Agostino is an assistant professor at the University of South Florida Morsani College of Medicine in the Department of Molecular Pharmacology and Physiology. D’Agostino previously discussed his research on the use of the ketogenic diet to manage cancer.
“Given that no effective therapy currently exists for ALS, neurologists should be informing their ALS patients of this therapeutic option,” said Dr. Agostino. “Anything that helps patients with ALS is useful.”
Tedone had no idea that the therapy her father developed years ago would be able to improve the lives of others struggling with ALS. “In the beginning, when I was trying anything and everything to see if something would help, I wasn’t even thinking of a therapy,” she said.
“Then, when my father discovered the right combination of supplements and it worked, I thought, ‘Oh my gosh, we’re on to something.’ I knew the therapy would have an impact, but I couldn’t fathom the extent of the impact.”