17 Apr 2021



Hello everyone, Just a short note to say today is my anniversary. One year on CAP. I just finished my 12th pulse yesterday and feeling it, ugh! My pulses are small, Flagyl 250mg BID X 4-5 days. Still haven't been able to work up to full pulses due to porphyria. But I do a pulse every 3-4 weeks. I feel my balance, cognition and numbness in my legs is a little better although I have been having a lot of calf and foot cramps and weakness in walking with this pulse.Only 4-5 more years to go. I am grateful to all the doctors who figured this out and all the people who came before me.