TSO: Wish I had never tried

It’ll be 2 weeks tomorrow that I drank my third vial of 2500 TSO ova, which began a massive flare up that I am barely getting under control.  Today is day 3 on 60 mg. of Prednisone, tomorrow I return to 40 mg.  I am getting weak and have lost 10 pounds in this time.  Luckily, the pain is receding.  The last 2 nights, I managed to sleep until 4 Am (rather than getting up 3-5 X), and though I’m still having mostly diarrhea, there were some formed pieces in it as well.  I still have no appetite, am dizzy, and have terrible pain around the anus.

Sigh.

The hookworms were kicking in before experimenting with the TSO.  Though they’ve never brought me total colonic healing, they’ve managed to keep my blood markers of inflammation at normal for 2.5 years, which is probably the longest I’ve gone in my 22 year history of Crohn’s.  A dose of 10 hookworms would last me about 5-6 months, and had I not been eating everything, I might have fared better.  In March of this year, my CRP rose one point above normal, and I was starting to have some pain, so that would have been the time to add 10 more worms and probably I would still be OK.  But I can’t go back and change things, so here I am.

My doctors want me to start Cimzia.  If Humira didn’t cause terrible worsening and my CRP to triple, I’d be more game, I guess.  But I feel like  a total worm failure at this point; the 15 hookworms I added the end of June caused a flare up at week 3 that I used Prednisone to quel. Then, 40 mg. worked almost immediately, and I stayed on it for just 5 days, tapering by 5 mg. every 5 days, with all solid stools, and lots of energy.  I was down to 5 mg. when I took my second dose of TSO which flared me, but I recovered then within a week.  I was down to 2.5 mg. with solid stools when I added the third TSO and all hell broke loose.

I guess I’ll decide next week what course I’ll take.  If I do try Cimzia, I plan to keep tinkering with the hookworms, adding 10 every 5 months and seeing if that does anything to help like it did in the past.  The benefits of hookworms these last years have been staying at an all time high weight, clear skin, muscles, energy, and normal CRP and ESR rate, although my lymphocytes have always been flagged as low, so immune activity never really normalized all the way.

I am so disappointed and frightened by these turn of events.  I will not be trying TT anytime soon, if the TSO is any indication of how I might respond.  Maybe if I can reach remission for another year on hookworms or some other drug, I might be in a better place to try it.

I so hate this disease.