4 days later.

I feel pretty awful today, although I doubt it has anything to do with ova. I began taking prednisone the day before I took the ova, to quell any potential reaction. In retrospect, this was probably a bad idea, as I dont do well coming off prednisone, even after such a short taper. I came down to 10mg, then today down to 5mg, and I’m anxious, headache, am sweaty, feel dizzy etc. Had to leave work early and come home to lie down. I’ve been through this before, and am probably coming off from it a little fast for my adrenal system, but I just want to be done with the stuff.

I’ve still had no diahhrea, and no discernable effects on my bowels from the ova. I don’t expect things to get worse until around day 12/13, which is when, I’ve heard at least, that they moult and migrate, and also supposed to be the peak of side effects. Luckily, this will fall on 4th of July holiday weekend, so I’ll be at a lake house, relaxing with a book and near a bathroom, ready for whatever may come.

Soon my little comrades will be strong, and ready, I hope, to go to battle with my overactive immune system.


6 responses

  1. I don’t understand about the Prednisone regime. When is the immune system most likely to kill the whipworms? If they hatch at 2 weeks to set up shop, wouldn’t you want to be on Prednisone then? Why just take it the first few days?

    Good luck! I’m so glad you’re doing this blog! Many people with UC are interested in this; I hope it works for you!!

    Are you going to do a colonoscopy eventually to see how many worms “took”? Have other people with whipworms done this? It would be really nice to know what the attrition rate is. Has AIT done this on themselves yet, do you know?

    July 3, 2010 at 2:56 pm

  2. Marc recommended that I do 10 – 20 mg of prednisone when I inoculated. Within a week, I had tapered to none (perhaps this was too fast). I didnt really have much direction on this point, and I hate prednisone, so I just tapered down quickly 20 for two days, 10 for two days, 5 for two days, and zero. Thinking about it now, it makes sense to be on prednisone for a bit longer, to cover the 2 weeks or so, like you said, but I guess its too late as it’ll be two weeks tomorrow. I wish I knew more about TT’s lifecycle, I should really get my hands on some more parasitology info.

    I would like to do a colonoscopy in 6 months or so. I’d just have to find a GI who would be willing to prescribe me one. As of now, I’m just under the care of my GP, as my GI wants nothing to do with the therapy. He’s an awful doctor anyhow, only wants to see me when I’m very sick, so I’m on the search for a new one for more than one reason.

    I dont know if any other UCers have done it, although I’m trying to network with any UCers that are using whipworm, so hopefully I’ll know more soon. That’s the most frustrating thing with TTO, is that the attrition rate seems to be relatively unknown. Best guesses I’ve heard range from 10-20% survival rate. In this sense, I’m ‘jealous’ of the hookworm folk, as it seems it’s easier to predict how many survived–although I know its not a perfect science either. I’m not sure if AIT people have scoped and peeked, I will ask next time I speak with one of them.

    Thanks for your words of encouragement! 🙂

    July 3, 2010 at 5:38 pm

    • Your taper seems SUPER fast to me, but it’s over now, so…

      I have opted to not do prednisone, I’ve been on a taper for a LONG time anyway, I just want to get off ASAP (I have permanent side effects). Right now I’m on 5mgs tapering by 1mg/5 days. In place of prednisone, I’ve started having “Super Blow-your-head-off Ginger Smoothies” every morning. Ginger is an amazing anti-inflammatory food. I had a “mini-flare” last week, after 3 days of ginger smoothies, I’m back in full remission. I’ll be posting an update on wormboy.tk with everything soon.

      I hope things go well for you!

      July 6, 2010 at 4:23 pm

      • Yes it was a very quick taper, but it is easier to do so if you’ve only been on it for a short time period, vs. a month or longer. I probably should have waited, but its over. I really hate the stuff. Mmm, what’s youre recipe for Super Ginger smoothie? Sounds declicious

        July 7, 2010 at 1:33 pm

  3. MG

    why don’t you also try hookworm as well?

    July 4, 2010 at 11:46 am

    • MG, I would eventually like to add in hookworm. But it seems, at least according to a few anecdotal reports, that some Ulcerative Colitis people do not respond to hookworm, and even a few have gotten worse. So, I’ve been told (and I agree) that for someone with UC, the best bet is to go for whipworm (TTO) first, give that 6 months to a year, see how I respond. If I respond very well, and its clear that the benefit is from the helminths, then it might make sense to add in hookworm, to see if a mix of the two might provide the best therapeutic benefit.

      July 6, 2010 at 4:03 am

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