UPDATE
Time for another update! I saw Dr. Kaufman two days ago.
But first, a brief detour: I've made a dietary change that appears to have changed the course of my illness for the better. I am now eating a ketogenic diet. Dr. Kaufman is encouraging me to continue with this diet. This means eating fewer than 20 grams of carbs per day (I shoot for as close to zero carbs as possible). 65% of my calories come from fat, 30% come from protein, and 5% come from carbs. On this diet, eating
a lot of fat is critical. This sounds extreme and even a bit "fringe," but there is ample research on the safety of this diet. Interestingly, two side effects of the diet are that it
lowers the risk of heart disease and leads to
weight loss. Most people would assume the opposite, based on the high fat content.
This ketogenic diet is effective for neurological disorders in general, and research indicates that it benefits Multiple Sclerosis (which has many similarities to our illness). It should also be noted that the human body is capable of functioning perfectly without carbohydrates; they are a non-necessary nutrient.
I won't go into more detail here about the mechanism behind the ketogenic diet (which is fascinating!), unless people want me to. I'll just add that it was rough transitioning onto this diet. I felt much worse than usual for a week. But once that cleared, I began feeling better than I've felt in a long time. This (relatively) good health has been going on for the past 5 days now. I'll post a few research article links about the diet, and then I'll get back to talking about my visit with Dr. Kaufman.
Ketogenic Diet and Multiple Sclerosis
Ketogenic Diet and Diverse Neurological Disorders
Prior to starting this diet, my health had peaks and valleys. Sometimes I'd feel relatively well and was able to work on my dissertation and a web design project, while other times I was incapable of doing anything requiring thought. For the sake of my health, I had to back out of a web design project that I was passionate about. It was either that or my dissertation, and my dissertation is the bigger priority, unfortunately.
Anyway, back to the appointment!
So, I arrived at the Open Medicine Institute and had a nice surprise. I saw a woman outside the building, coming up the walkway to the door. I held the door open for her, not yet knowing who she was. She turned out to be the lovely
@NK17 . She recognized me from my picture here on PR.
Small world!
My appointment started out with a SIBO (Small Intestinal Bacterial Overgrowth) test, which lasted 2 hours. I was negative for SIBO! That was a relief. After the SIBO test with Lorie (friendly nurse), I sat down with Dr. Kaufman to talk.
Dr. Kaufman noted that I appeared to be doing quite well and asked me to describe things in detail. I told him how the diet is helping me. We discussed my orthostatic intolerance, which is still present to some degree, though it isn't bad. We discussed my energy levels, which have been consistently better for the past several days (which I attributed to the keto diet and Dr. Kaufman acknowledged was very possible). We also discussed possibly trying Rituxan in the future. Dr. Kaufman said that I am making fast and steady progress on Valcyte and Famvir, so Rituxan might not be necessary down the line if this regimen produces a remission. Overall, it was a good visit. Dr. Kaufman is such a good listener and is very compassionate.
What really stood out about the visit was how well I handled the travelling and the hotel. It was so easy this time compared to previous trips to the OMI.
That's about it! I'm so thankful for how things are going right now.