It’s been about 2 months since I started my autoimmune protocol (AIP) diet in earnest for the Myasthenia Gravis double vision symptoms. In the beginning, there were some huge stumbles. I’ve gotten a lot better with maintaining discipline and even enjoy meat now (I was mostly pescetarian since I was a teen).
It’s hard to tell if the diet actually helped because I started a new medication regimen at the same time, started doing some light yoga, and saw an acupuncturist recently.
I also recently got prism glasses but my double vision has improved by about 25%-90%, depending on how much visual concentration happens throughout the day. The percent is more of a personal assessment. The prism lenses are now too strong, although I still need them sometimes. That the lenses are now too strong is a good problem to have.
I think the medication, Prednisone, has helped the most. My double vision starts later in the day and I have more energy. It’s been about 5 weeks since I’ve been on the medication and my doctor is supposed to wean me off after they figure out the lowest dose that works best.
I’m happy with the results so far but overall, with the combination of double vision and fatigue, it isn’t 100%. It isn’t even 75%. I’d like to go into remission someday but I don’t know if that’ll ever happen.
Trying AIP has been, uh, interesting. For some reason when I eat foods from the “no” list, I start to feel weaker. I can’t tell what’s going on with that. Maybe there’s something to it. Or maybe not. It’s made me frightened of all foods from that “no” list, especially gluten/dairy/nightshades/nuts since that’s what a holistic specialist told me I had the biggest reactions to. I’m still questioning the accuracy of this; the only thing I have to go on is my body’s response, which I don’t think is something to also take lightly. The nurse practitioner at the neurology office I go to also said I could see a holistic specialist — she seemed enthused — so it doesn’t sound like there’s anything wrong with adding that to the mix.
Since I was 19, I’ve had an aversion to too much meat and was a strict pescetarian for about 8 years. The aversion to meat started when I saw my stepdad avoiding red meat and pork. It blew my mind when I first met him and saw him eating tofu and beans instead. I decided to mirror his diet more since he did it for health reasons.
My mom also had cancer and the oncologist told her she had a few months left so the only thing left to try was to eat less meat. I’m not sure if they told her that exactly, but that’s what she told me at the time, and it was frightening as f*ck. Back then that’s when it hit me I should really eat less meat. But it coincided with starting drinking and occasionally smoking — I think the toxins I was taking in outweighed any benefits of the pescetarian diet.
Redoing my food pyramid and managing my health has been all-consuming. I’m learning I don’t mesh well with pork regularly but can eat chicken almost daily. I haven’t even tried eating steak yet — I still can’t get over that aversion.
I’ve been eating SO MANY vegetables. I love vegetables so much now, more than ever! Vegetables taste sweet like candy. I now crave it. I sit with a bowl of arugula/sweet potatoes/basil/mint/avocado/lime and eat it while staring lovingly into space, relishing it as if it were ice cream. It’s obscene how good vegetables have become.
I’m not going to create a recipe blog or anything like that yet because I eat the same things almost every day. There is also already an abundance of AIP recipe blogs one can reference. Maybe after I gain more experience with cooking, I’ll share some favorites.
So in short, the Prednisone has helped the most. But I truly enjoy this AIP diet because it gives me something to plan and look forward to. AIP has also made vegetables taste obscenely good.
I don’t know if Dr. Sarah Ballantyne, one of the leading experts on AIP, would give me a high five over the diet due to how I’ve been modifying it. There’s zero red meat or bone broth.
I probably need a nutritionist but already see 10 million doctors, am moving in December, and need to settle down some more before adding a nutritionist to the mix.
I saw a “top-rated” nutritionist a year ago to adapt my diet to the disease. I told her I heard that gluten and dairy can cause symptom flare ups, so she simply said, “then don’t eat gluten and dairy.” And she actually wrote down on a piece of paper, “no gluten and dairy,” then handed me that piece of paper. Then she told me to eat healthy, which was how I was mostly already eating at the time, and again she said to exclude gluten and dairy to see how it makes me feel. She kept repeating that I “appeared” healthy. That whole experience put me off.
