We just got back from Kim’s first checkup appointment with Dr. Sriram. We had a family visit along the way and we also decided that we would not drive straight to Nashville in one day again. This trip we had the boys with us and we opted to try to make it as vacation-like as possible. I will get to the appointment soon, but first …..
If you have kids and you’re passing through Roanoke on I-81, you gotta visit the Virginia Safari Park
. Having a llama stick its head all the way in your car is topped only by how it freaks out your kids. Buy four buckets of food and take a videorecorder. This was soooooooo totally fun. Car is now filthy.
We waited in a line out the door and onto the sidewalk, 30 minutes on a Monday morning before our appointment with Dr. Sriram. It’s just a few blocks from the Vanderbilt MS Center. The Pancake Pantry
’s line moved fast and was worth the wait. Next time we’ll get there a little earlier. We got lost on the way there and only had about 30 minutes to eat. But it was worth it.
The appointment was faster this time. Kim had a record walk as measured by the nurse, 5.5 seconds! We got her time from their files of the December walk, 20.24 seconds. When we met with Dr. Sriram he appeared puzzled. He kept flipping back and forth through Kim’s file like he was searching for the one thing that Kim was doing different. I asked him how his study was going. He seemed apprehensive, maybe quizzical. I got the impression that he questions whether the study is going to yield defining results. He said something like, “it would be hard to believe if I had not seen it myself, and even then I don’t know that I believe it” (please note, I don’t have this as an exact quote – it’s more like the feeling I got that I remember). We were very clear that Kim was getting better and that we wanted to continue the treatment. I asked him if he thought “subset” was the key word. He said that it doesn’t seem to work for everyone. But then, he said that his trial was designed before folks were using pyruvate and he also said that the trial is weighted toward more progressive participants. I don’t remember him saying this, but I some how got the impression that he doesn’t use NAC in the protocol. I felt reminded of the burden he bears and the courage it takes to stand tall before those who would mock you.
Clearly there are others in his care getting results like Kim, but it doesn’t sound like it’s everyone. Maybe not even a majority. But as I see it anything greater then zero is an improvement.
He had seen the videos of Kim’s walks and we gave him a second disk of walks. He wanted to see the chart that I had made and I told him that, as best as I could, I compared Kim’s walks with the Fampridine results and showed that Kim was doing better than the average in the phase 3 trial. He found this interesting and he chuckled. It’s clear to me that Dr. Sriram knows he has something, but he’s having a heck of a time getting his hands around it. And then there’s the word “subset”. I think there might be something to this. I have to wonder if the ABX penetrates the blood brain barrier equally in everyone, but then again, that would seem to be an obvious question for an MS Researcher. Kim reported the improvements that I have reported in prior posts and in what I take to be a very positive sign, Dr. Sriram wrote Kim new scripts.
Kim is still taking Rifampin, Azithromycin and Flagyl as before. Her Pyruvate has been increased to 3.0 grams 30 minutes before Azithromycin, from 1.5 grams. Kim also asked about continuing Copaxone and Dr. Sriram said that it didn’t seem to be doing anything for her. Kim was thrilled, no more shots! He also asked about the vitamin D Kim takes and he wrote her a script for 50,000 IU vitamin D she can take once a week. I asked Dr. Sriram about how eating seems to improve Kim’s balance and coordination. He really didn’t have anything to say about that. He also couldn’t comment about N-acetyl Glucosamine. Kim has also posted about her 6-month check up
with Dr. Sriram at CPn Help.org. Kim’s next appointment is in January and Dr. Sriram will order an MRI for that one.
You might think someone like me doesn’t miss details. But, I do and sometimes they are huge. This past Sunday Kim has had some difficulty walking. We visited the Flight 93 Memorial in Shanksville, PA and didn’t get home until late. But we knew we needed to video her walk over the weekend so we set up the video. Kim did the walk in just over 6 seconds! This didn’t square up with he wobbliness most of the day and I asked her about it, we even did the walk late at night when she is more tired. Kim said, “don’t you know I walk better without shoes?” OMG! I had no idea. How did I not know notice this?
I realize that this post might seem like a report. Reports are designed to communicate information in one direction. I don’t want this thread to be a report. I understand that I lay information out like a report, but I have noticed that a lot of folks have clicked this thing open in the past month and I’d love to answer questions as best as I can. I’m also hoping for new ideas as Kim and I are starting to think more about exercise.
So this brings us to the current dilemma. If Kim makes a greater effort to exercise during the day, it seems to “cost” her at the end of the day. It’s as if there is a certain deposit of energy each morning and when it’s gone, it’s gone. Kim doesn’t like how exercise seems to impact her ability to get things done in the evening. But then again, one would think that if she did more exercise over a few weeks, she would gain strength and have more energy and power following an investment. Does anyone have experience with this? What do you think? Ken