Dear MsL,
I"m not really familiar with the Swiss system, but thank you for the head's up on it, I will definitely look into it. As for the boosters I got in Germany, they are not general protocol. I didn't get them the first time, partly b/c I had just gotten more Ketamine than they had every given b/c the coma ended up being three weeks. Also, I woke up in complete remission. The reason I got them in Germany the second time is b/c when I woke up, I was getting tremors and spasms in my left arm and shoulder. Dr. Rohr put me on a high dose of Lyrica to continue for six months. He also did a few boosters to try to enhance what was done by the coma. The protocol for the German coma is that when you get home, you have to do follow up boosters with Dr. Schwartzman. Generally speaking, since it sometimes differs depending on how you're doing, withing two weeks of coming home, you get two boosters in a row. The two weeks later you get another two in a row. Then a month later, the same and as long as you are still in remission, three months later you get your final two boosters. If you are having no RSD symptoms, you are then released from the Ketamine program. If something happens, like the girl I went with for the first coma, a little after a year from the coma, she was pushed at a concert and sprained her ankle. She had no return of RSD symptoms, but as a preemptive strike, they brought her back for two boosters. This October, she'll be two years in remission. She is the ideal outcome of the treatment. They say that 50% of the patients go into remission and of that, 30% hold the cure.
Unfortunately, the success rate in Mexico is lower, but that's b/c Dr. Kirkpatrick doesn't really do follow up. He offers boosters to his patients, but they're really expensive and he doesn't tell them, that it's needed to boost your nervous system and enhance the effects of the coma.
As for my situation, I have had to continue with the boosters, but have also had issues with that b/c my LFT's (liver enzymes) went up dramatically after the first coma. I was not able to get Ketamine after December (I had the coma in October). I had to wait till June to get Ketamine for a week in-patient but it was only b/c the treatment I went in for backfired. I then ended up back in the hospital b/c the RSD spread into my digestive system and I couldn't eat or hold any food down. The ran a bunch of tests and kept in the hospital for two weeks checking things out. They gave me Ketamine with the endoscopy and that helped to keep the RSD from flaring up even more. They also did a Trans-jugular liver biopsy which I needed to go back to Germany. After the second coma, I just had the spasms and tremors in my upper left side of my body and minimal amounts of pain. I was going every couple of weeks for Ketamine and was not on any meds except the Lyrica. I was at rehab and the gym 3 days a week for eight hours each day. I was starting to really build up a lot of muscle and was able to ride my bike for the first time in 8yrs and shoot and dribble a basketball for the first time in 7yrs. I was a varsity b-ball player and was looking into playing in college, but that's when the RSD started spreading. I also was able to go to a club and dance for the first time in almost 2yrs, and I did it in stiletto heels and had no pain from it. I was a theatre and dance major in college, so it was really big for me. I'll never be able to dance at a competitive level again, but as I'm sure you are aware, to be able to do something you love and have not been able to do, even if you suck royally, it feels amazing.
Unfortunately, three months after the second coma, they found another tumor in the bone in my right knee. They had to take out the bone and do bone graphs. I was in the hospital for nine days getting Ketamine, but unfortunately as soon as they turned it off, the RSD raged out of control again. I was in a rehab hospital for 2 weeks and have been in a wheelchair for 4 months now. I live in our living room where my hospital bed is. I have a PIC line and have to administer IV medications throughout the day and night.
As I always have and as I'm sure you have as well, I will fight this disease till the last breath I take in order to get my life back. I have no idea what lies ahead for me, but I have had a taste of what it is to live some semblance of a normal life and I won't stop until I get it back. I imagine you are the same, you can tell that you have a fighting spirit from the way you talk (by the way, that's a compliment with nothing but sincerity). Hold on to that, it is the most crucial tool you'll ever have when fighting this disease.
As for high dose boosters, you can get anywhere up to 1,000 mg infusions over a three-four hour infusion. Sometimes, they do 1 or 2 gram boosters, at least they do in Mexico, but I'm not positive about Germany.

Sorry this was so long, I just wanted to answer all of your questions to the best of my ability. I truly hope that you have found treatments in Canada that have helped you or that you haven't tried yet that have the potential to really help you find relief. I will continue to keep you in my prayers and look forward to the continuation of sharing our experiences and information. I will also look into the Swiss system.
~Judy