It was much easier to write this blog at the beginning when I was so hopeful of having found a solution. I still believe that antiretrovirals may be a piece of a solution, and I continue to take them. Their … Continue reading →

When I started writing this blog, I was a very sick patient and the mother of a very sick patient, who had been neglected and abused by the medical profession. I made our experiences about trying to treat the disease … Continue reading →

It has now been over 500 days since Lombardi et al was published in Science. Yet we are being subjected to the publication of a five million pound study that was designed by people with conflicts of interest to prove … Continue reading →

My trip to Reno was very productive. Energizing even. No crash this time (knock on wood). The nuts and bolts of the practice are getting worked out, but the exciting part to me is the synergy of like-minded people with … Continue reading →

Unfortunately, fulfilling my prime directive here involves reporting the bad news with the good. I’m in the process of reemerging following a full-on crash. I was down for the count for three days. Worst crash in over a year. I … Continue reading →

I flew home from Reno yesterday. It was a very successful trip, aside from the phenomenal distances involved in negotiating LAX; in the future I will swallow my pride and arrange for a wheelchair. I functioned for eight days in … Continue reading →

One of the best parts of this journey from a medical point of view is that it is based in hard science. It is the first time in my career, including training and sixteen years of emergency medicine, that voodoo … Continue reading →

I’m aware that reading past blog entries leaves something to be desired in terms of understanding our clinical course, so this is an attempt to take stock of where we’ve been and where we are. I hate rating scales. I … Continue reading →

We seem to be slowly, but surely, getting lives. For real. Ali is past 40,000 of her 50,000 words for NaNoWriMo and functioning socially on a level that has been lost to her for years. I’m trying to figure out … Continue reading →

We’re about the same as the last times we posted. Much better than when we started, but not quite as good as we were a month ago. It’s so hard to tell, even week to week. Month to month is … Continue reading →