I've been thinking about you all and thought I should post an update on my status: I am feeling very good.
Twickle Purple's blog
The gallbladder disease was a symptom and we fell into a bit of shock reading the ERCP report. Everything was quiet over the holiday and the hospital called urgently on the 23rd to get me back but we ignored them til today. I'm trying to learn all I can about Ampullary Carcinoma, so I am prepared for my appointment next week. Guess it explains my weightloss. I won't be going back on CAP, I'm refocussing my energy now.
Thanks for all your help, kindness and support.
I wish you all a healthy and happy 2009.
About the time I began this protocol, unbeknownst to me, I was in an advanced stage of chronic gallbladder disease. I felt terribly unwell throughout my time on CAP. Unaware of the cause of my distress I stopped all supplements and ABX, yet did not get better. I got worse. 24 hours ago I was finally diagnosed and the offender was removed. Just with the absence of pain I feel better. Once the dust settles I will begin CAP again, I have benefited from it. I hope my previous troubles does/did not put any folks off. Also the unrelenting yeast is due to my constant steroid us. That's it for now. My energy is low.
I hope someone has a fix for me. I picked up yeast pretty quickly after beginning CAP. This surprised me because I have a morning protien shake with caproil, etc. and take therapeutic doses of probiotics. I took vitamin D and progressed to high doses because I read that helped, it didn't; I took VSL#3 and it did nothing; then FiveLac and finally ThreeLac because FiveLac gave me an allergic reaction. Nothing helped. My mouth thrush was so bad the throat swelling and pain mad it hard to eat and speak, my voice is a bare whisper. Along the way I even tried gargling with Iodine and all I did was stain my mouth and make my spit black. The yeast was everywhere. I began a high dose of Nilstat and when that didn't work went on DiFlucan.
I have been more debilitated, for a longer continual period of time than ever in my life, since starting the CAP.
I have been bed ridden almost completely for 6 weeks. I am in pain, I am weak, I throw up almost every day. I finally learn which anti-porphyric and endotoxin measures work best for what, and how and when to take them, when the very measures that are supposed to help me end up making me sicker. I do all the things right so that I don't get side effects -- from anything -- and I am run over and flattened. I should not feel this bad, I'm doing everything not to.
You have been a light for me in my darkest times. I have followed your posts and your journey with a sort of awe -- you are such a wise and sensible fellow who is also warm and gracious -- I think you are one of the best sorts there is.
Now I have learned of the terrible heartbreak that has befallen you, such a lovely person, and I know there is no karma in this insanity! Irrational as it may be, I feel an anger at the unfairness of it all.
Over the last year, I have developed an intermittent pain in my left arm, in the muscle above the inner elbow. The attacks are sudden and very painful. The muscle seems to go rigid and the pain feels deep, closer to the bone. It is very focussed but the lasting ache and exhaustion of it affects the arm to the armpit and my entire arm is weak with fatigue when the episode ends. I can't figure out what triggers this, and nothing I do makes it stop. It lasts anywhere from a few minutes to half an hour or so and can happen once a day or off and on for hours over the course of the day. It seems to happen in the later part of the day. The episodes are building in frequency.
Any advice or recommendation would be very welcomed. This really hurts.
1st two months benchmark:
I began with Vitamin B12 injections. Starting with 3000mcg injections a day for 5 days to get my load up, my energy levels stopped crashing after about the first week. From that point I went to 1000mcg/day for the next 5-6 weeks. Now I'm starting a routine of 1000mcg/week. If my energy levels dip again, I experience too much stress, or I pull really long hours at work (my hours have been brutal since Jan.), I will give myself a booster shot.
I just got off the phone with my doctor and she is not comfortable initiating the treatment protocol because of legal, ethical and safety concerns. She was sympathetic to my situation and will bring this topic up for discussion at the team meeting tomorrow afternoon, and is going to look into it further to find substantiating data.
NOTE: I changed the name of the blog.