Vyvgart, Creatine, & Spirulina: My MG Success Story

There is so much I want to share about living with Myasthenia Gravis (MG), a condition I was diagnosed with at age 50.

For 19 years, I was successfully treated with Intravenous Immunoglobulin (IVIG). It worked very well until one day, in a flip of a light switch, it suddenly stopped. My neurologist tried adjusting the dosage and frequency, and even included previously unnecessary medications like Mestinon and prednisone. Eventually, I felt I had done enough, said goodbye, and sought out a new neurologist.

My new doctor’s suggestion was straightforward: "If it's not working for you, let's try something else that does." His suggestion was Vyvgart (efgartigimod). So far, it’s been pretty good—not 100%, but a significant improvement.

I never stop trying to find ways to help myself, which includes a lot of prayer and continuous research into human biology. I want my energy back, and only those who have MG can fully appreciate that desire.

Diet, supplements, and self-advocacy

My diet is simple: mostly clean fruits, vegetables, and protein, with absolutely no gluten. I also found that many supplements are sourced from China with poor ingredients, which led me to prioritize quality. I am not an advertisement for Vitality Nutrition, but they represent a class company that only sells quality products after rigorous testing.

I’ve recently started taking two supplements that truly moved the needle for me:

Spirulina: 5 grams every morning.

Creatine Monohydrate: 5 grams daily.

To specifically address my energy, I take sublingual vitamin B12 in the methylated form every morning, as I believe this is when it’s most effective. I've also started taking high doses of vitamin B1 (Thiamine) by itself, which I believe has been a positive step.

For some time now, I have also taken high doses of Vitamin D3 with Vitamin K2. My normal daily dose is 5,000 International Units (IU), but if I feel like a cold is coming on, I will kick that up to 20,000 or 30,000 IU. If you ask a doctor, they will likely advise against this. However, speaking from personal experience as a person with MG, I have never had a negative side effect, and I get blood tests every six months. I aim to keep my blood level around 60 nanograms per deciliter (ng/dL). I am not a doctor, and this is not medical advice—I am simply sharing what works for me.

Perspective

Not every day is a perfect day, but I am having more good days than bad. If I ever feel sorry for myself, I simply think of the children at St. Jude’s, say a prayer for them, and magically, I don't feel so bad.