@Nicecupoftea--well, I haven't approached a cliff yet! Lots more to my life to celebrate and live for than just this darn and horrible disease!
Big turn of events and big decisions to make. GI very concerned about
fatigue, malaise, loss of appetite, skin rash, and vision issues. But thrilled with the crohns symptoms subsiding. thinks maybe just maybe my jejunum fistulae have closed up! The timing of my double dosing humira would be right and could have worked even better with the protocol. However, he wants me to drop the protocol for at least 2 weeks. We will do a ctMRE in one month. If the crohns symptoms start coming back I'm to call him and go back on the protocol. The new symptoms are alarming especially bc my clod work and electrolytes are fairly good.
In meantime, Dr Hintz and my naturopath have communicated and would like me to change up my protocol big time: 2 NeuroReplete (down from 8), 1 d5 mucuna (down from 2), stay with 6 CysReplete , and ---drumroll please---15 tyrosine capsules in the morning.
They believe I should see an improvement in the next few days. How I'm going to get 15 capsules down in one sitting is beyond me. . . Where there is a will. . .
I don't know. Have been with my GI for 28 years. I trust him completely. But I'd like to try the new protocol for a week If the fatigue, malaise, appetite, etc don't improve, it's time for a break. Interesting: my blood work while still not great has improved.
But what do people think? Would you go off for 2 weeks and let your body regroup a bit? Or jump on in and try some more?
I missed work today. I don't miss work. I've gone in at my worst--in massive pain, depleted of nutrients, down to 90lbs. I went to work for 2 months with the TPN backpack. But I couldn't drive this morning. I have driven myself to the ER. If I were away from home I'd have to call an ambulance. This is very tough.
I just got another bill: phone consult, tyrosine, urine lab, and green algae food: $452. I have spent well over $2000 already and it's been just 5 weeks.
28 years with Crohn's/colitis; fistulizing crohn's; permanent ileostomy/total proctocolectomy; Humira among other meds, PSC + kidney issues from Crohn's