Guest Voice: My journey with ocular MG and ketogenic metabolic therapy
How the therapeutic diet has affected my MG symptoms
Hannah Kaye is a nutritional therapist based in Cape Town, South Africa. She has been supporting clients with autoimmune diseases and mental health issues using functional nutrition and lifestyle interventions for the past 15 years. She was diagnosed with ocular myasthenia gravis (MG) in September after a long battle with fatigue. When she’s not working, she can be found swimming or hiking. She has a gorgeous 11-year-old daughter as well as two rescue dogs, and they are her entire world.
After being hospitalized for COVID-19-related pneumonia in August 2023, I struggled to recover. I was on prednisone for months, and my energy levels were extremely low. I put it down to long COVID-19, but the exhaustion was relentless and often left me feeling nauseated.
By March of last year, driving for more than 15 minutes had become unbearable, as I constantly felt I needed to rest my eyes. In August, my daughter and I attempted a hike, one I’d done many times, but I could barely complete it; I was drained for days afterward. I’m ashamed to say this now, but I was using Ritalin (methylphenidate), which typically treats attention-deficit/hyperactivity disorder, just to focus and cope with my workday. Around this time, I noticed my eyelids were drooping, particularly the right side.
I was finally diagnosed with ocular MG at the end of September.
As a nutritional therapist working in the functional medicine space, my instinct was to explore dietary changes. I’ve always believed that the body has the innate ability to heal itself with the right interventions. I considered several options, including the autoimmune paleo diet, a kind of elimination diet, but ultimately decided that ketogenic metabolic therapy (KMT) made the most sense for me, given my neurological condition.
What is ketogenic metabolic therapy?
KMT is a therapeutic dietary approach that shifts the body’s primary fuel source from carbohydrates to fats, producing ketones as an alternative energy source. Research suggests that this metabolic state, called ketosis, may enhance cellular energy efficiency while reducing inflammation and oxidative stress. In MG, oxidative stress can damage acetylcholine receptors — proteins that transmit nerve signals to help coordinate muscle contraction.
Developed for epilepsy management, KMT has shown promise in addressing a wide range of conditions, including neurodegenerative disorders, metabolic syndrome, and mental health issues. Although there are no published studies on KMT for MG, a German study on the subject is underway and set to conclude this year.
Given the documented benefits of KMT for other neurological conditions, I decided it was worth trying.
Beginning my KMT journey
Before starting KMT, I completed two advanced training courses to understand the nuances of therapeutic ketosis. Unlike a standard ketogenic diet, KMT requires sustained therapeutic levels of ketones, necessitating strict fat-protein-carbohydrate ratios. With guidance from two of my lecturers, I determined that a 1.5:1 ratio was right for me — 1.5 grams of fat for every combined gram of protein and carbohydrates.
Transitioning to KMT wasn’t easy. The initial adjustment period lasted about 10 days, during which I felt worse in terms of my energy levels and my mood. After that, the emerging transformation was incredible. My energy levels improved dramatically — going from utter exhaustion 24/7 to feeling tired only in the early evening. The heaviness in my eyes while driving improved by about 80%.
Even as someone with 15 years of experience in nutrition, I was astonished by the impact. I stopped taking Ritalin completely and have used Mestinon (pyridostigmine), an MG treatment, infrequently since. I still have good days and bad days, especially with stressful events, but just to be able to drive again without struggling with my eyes has been amazing.
At this stage (I’m currently around 10 weeks in), the ptosis (drooping eyelid) hasn’t improved significantly, especially by day’s end, so I’ve decided to incorporate low-dose prednisone into my action plan.
The challenges and rewards of KMT
Living a KMT lifestyle is not without challenges, especially in a world that’s obsessed with high-carbohydrate and sugary foods. Meal preparation requires careful planning, and eating out can be tricky, although not impossible. The misconceptions about ketogenic diets add another layer of complexity when discussing my choices with others. Yet the rewards for me outweigh the difficulties.
On Jan. 1, I returned to the same hiking trail that had left me so drained in August. This time I felt amazing. I climbed the mountain, swam near the dam at the top (even though it was illegal!), and descended without significant fatigue. The improvement was life-changing and an incredible way to start the new year.
Yes, I miss the ease of grabbing a piece of fruit, toast, or chocolate — and I especially miss a glass of wine. But when I feel deprived, I remind myself of that hike and the profound difference KMT has made. I don’t know what the future holds, and the anxiety about how this disease may progress can sometimes be overwhelming. At this stage, however, KMT has given me the ability to live my life again and enjoy nature time with my daughter — and for that, I’m profoundly grateful.
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Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
