Another pint
no, not drinking, loyal readers, but back ot chicago for more testing at the Pfeiffer center and yet another pint of Michael's blood collected, spun and tested.
First of all, I had a great weekend. I loved Chicago. Boston is a good town, maybe better by the fact that it is manageably smaller, but Chicago was a great time. I will not much belabour you with reminiscance, I try to keep the eyes of this blog firmly planted on my own receeding craziness, and the exoeriences that brought me back ot health, but I must say that never has a trip to the doctor been so much fun.
I did meet with fellow Journey-er C. We will call him C. He is a great young man with a great family behind him. We all met up in Millenium Park and had a catch up and picnic in a light mist. He has just begun with the Pfeiffer Center. I do not think, from talking with C, that he feels that he is at the point were he is strongly responding to the therapy, but his family seems to feel he has improved substantially. I looked at him and wondered if I was looking at myself 5 years ago. He seemed happier than I was then, but I have been told by good friends that noone could tell that I was in H*ll at that time.
From the Pfeiffer Center: First off all, I have a peeve here. The pfeiffer Center literally, really, saved my life, there is no denying that, but I flew 1500 miles and got to speak with a nurse practitioner. A Nurse. Ok, yes, I was late, but I was peeved. I let that last about 30 seconds while I decided if I was going ot be a pain in the *ss about it, but then decided, well, if they are giving me the greenie, we can put her through the paces. I asked her everything, and to her credit, she answered honestly what she could and gave me personal insight into her own recovery ( She was histapenic like me). There were answers that I still need, answers about screenign and childeren and inhertiability, but I might not get those answers ever. Yes, procreation might be a bit of a roulette for my poor son/daughter. I am sorry kiddo, in advance. I know there is a 15% chance that you will have this, and only an 85% chance that if you do you will recover, and I promise that I will think about this as carefully and selflessly as possible, but I might still not get the green or red light I want and have to make a decision. I hope it works out for you.
But I digress.
I asked if niacinamide was better than Niacin and why the flush is important. The PFC told me that they actuall yonly give niacin for people with liver troubled, and otherwise prefer niacinamide. The nurse practitioner could not tell me why that was.
I learned that a histapenics histamine levels will not usually rise with recovery, but a histadelic's will lower. Huh. How does one know when to stop then?
I learned that I take a lot of b-6. I had no idea. I take it in p5p active form, so that my liver needs not convert it, and the nurse said that she rememebred that 10mg of p5p was equal to 100 mg of B-6. That cannot be right, but I have read similar reports elsewhere.
I learned that the PFC missed diagnosing my pyroluria becuase the lab they used did not allow for the dilution of urine for people who drink a lot of water. now they take the specific gravity into account. That brought my last Kryptopyrolle reading out of the normal range, and increased my wellness considerably when treated.
THey did not seem to think that my food sensitivities and chemical sensitivities would ever dissapear, but that they would diminish. Well, thanks PFC. They already have. But I suspect they are wrong on this one. I am getting cocky about my recovery. And so be it, I think I deserve to be a little cocky after what I have been through.
Noone had any answers for why I get hypoglycemia in the middle of the day every day whether i eat or not, but they did caution me to stay away from fruit and encourged protein consumption. Not news to me, but maybe to you.
But now I wait. Wait for my blood to come back.
By the way, for anyone who is interested, and that probably includes me and noone else, my grandfathers brothers were named, Ludwig, Rikard, Yarlslav, Arnost, Edvard, and Jurgi. Thats is a great collection of names.
First of all, I had a great weekend. I loved Chicago. Boston is a good town, maybe better by the fact that it is manageably smaller, but Chicago was a great time. I will not much belabour you with reminiscance, I try to keep the eyes of this blog firmly planted on my own receeding craziness, and the exoeriences that brought me back ot health, but I must say that never has a trip to the doctor been so much fun.
I did meet with fellow Journey-er C. We will call him C. He is a great young man with a great family behind him. We all met up in Millenium Park and had a catch up and picnic in a light mist. He has just begun with the Pfeiffer Center. I do not think, from talking with C, that he feels that he is at the point were he is strongly responding to the therapy, but his family seems to feel he has improved substantially. I looked at him and wondered if I was looking at myself 5 years ago. He seemed happier than I was then, but I have been told by good friends that noone could tell that I was in H*ll at that time.
From the Pfeiffer Center: First off all, I have a peeve here. The pfeiffer Center literally, really, saved my life, there is no denying that, but I flew 1500 miles and got to speak with a nurse practitioner. A Nurse. Ok, yes, I was late, but I was peeved. I let that last about 30 seconds while I decided if I was going ot be a pain in the *ss about it, but then decided, well, if they are giving me the greenie, we can put her through the paces. I asked her everything, and to her credit, she answered honestly what she could and gave me personal insight into her own recovery ( She was histapenic like me). There were answers that I still need, answers about screenign and childeren and inhertiability, but I might not get those answers ever. Yes, procreation might be a bit of a roulette for my poor son/daughter. I am sorry kiddo, in advance. I know there is a 15% chance that you will have this, and only an 85% chance that if you do you will recover, and I promise that I will think about this as carefully and selflessly as possible, but I might still not get the green or red light I want and have to make a decision. I hope it works out for you.
But I digress.
I asked if niacinamide was better than Niacin and why the flush is important. The PFC told me that they actuall yonly give niacin for people with liver troubled, and otherwise prefer niacinamide. The nurse practitioner could not tell me why that was.
I learned that a histapenics histamine levels will not usually rise with recovery, but a histadelic's will lower. Huh. How does one know when to stop then?
I learned that I take a lot of b-6. I had no idea. I take it in p5p active form, so that my liver needs not convert it, and the nurse said that she rememebred that 10mg of p5p was equal to 100 mg of B-6. That cannot be right, but I have read similar reports elsewhere.
I learned that the PFC missed diagnosing my pyroluria becuase the lab they used did not allow for the dilution of urine for people who drink a lot of water. now they take the specific gravity into account. That brought my last Kryptopyrolle reading out of the normal range, and increased my wellness considerably when treated.
THey did not seem to think that my food sensitivities and chemical sensitivities would ever dissapear, but that they would diminish. Well, thanks PFC. They already have. But I suspect they are wrong on this one. I am getting cocky about my recovery. And so be it, I think I deserve to be a little cocky after what I have been through.
Noone had any answers for why I get hypoglycemia in the middle of the day every day whether i eat or not, but they did caution me to stay away from fruit and encourged protein consumption. Not news to me, but maybe to you.
But now I wait. Wait for my blood to come back.
By the way, for anyone who is interested, and that probably includes me and noone else, my grandfathers brothers were named, Ludwig, Rikard, Yarlslav, Arnost, Edvard, and Jurgi. Thats is a great collection of names.
posted by warnerk | 3:41 PM
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