Day 25 of Helminthic Adventure #2

Holy Smokes!  I can't believe it's already been 25 days since 200 little TT ova went down the hatch!  I've been meaning to do an update on my status, but just haven't done so until now.  First, let's review some of the basics:

• I'm taking a protocol of 2,000 whipworm ova spread out over several doses that I will take each month.  This is different from my last try, where I took 1,250 ova all at once.  The idea is that smaller doses at monthly intervals might not be as likely to trigger a severe immune response, so they'll stand a better chance of surviving this time.
• A lot of people ask me if I can see the worms swimming around in their liquid, and the answer is no.  These are not worms yet, they are ova, that is, worm eggs, and they are so small as to be invisible in their liquid.  So each dose is just a matter of sipping a teaspoon of tasteless, odorless, clear liquid out of a small vial.  It's quite a non-event, actually.
• I took one dose upon receiving my little friends, and now the rest are chillin' in my fridge, next to the butter, waiting to be "called up."  Supposedly, they will be fine there for several months, but without a microscope, the know-how, (or really, the interest) I have no way of knowing for sure if they are actually viable.  This is the biggest glitch in the plan for me.  I'm assured these fellas are really hardy, but since we still don't know why they didn't survive the first time, I'm understandably a little leery about every little variable, like maybe I keep my fridge a little too cool for them, or maybe they are lactose intolerant and shouldn't be so close to the butter....
• The lifecycle of the whipworm is such that we should be able to start testing my stool to see if they are in there in about another month.  But even if they are alive and getting settled, I won't know for several more months if this treatment is working.  I'm generally targeting Christmas-time as my milestone for hopefully getting a little relief from the UC symptoms. 

Symptoms and Drugs
On average, I am feeling about the same as I have for a while now--about 5-7 bm's/day.  Several of these quite urgent, meaning I've been racing to the bathroom a lot (and not always making it in time.)  A little bit of bleeding, but not much in the way of mucus or cramping.  Generally, this is a pretty good status, which may actually make it easier for my worms to get settled.  I've heard that people who are in the middle of a dramatic flare have less success with this treatment because their immune system is so freaked out that the worms don't really stand a chance.  So, since mine seems to be fairly relaxed right now, I may be better off.  (But who really knows?)

The main thing that is getting to me right now is my prednisone dose.  I started taking 12.5 mg/day right before dosing as insurance in dampening the immune response.  That seemed to go okay, and then I stepped down to 10 mg/day about a week ago.  That's about when the side effects really kicked in.  I'm not sleeping well, I am an emotional train wreck, and my appetite is bottomless.  Mentally, I am unfocused and can't seem to complete the easiest of tasks, and then when I do something dumb like double book my calendar, I get really upset about it.  The good news is that I've been down this road before so I know it will get better as I continue to reduce the prednisone.  Also, I'm fairly able to be objective and just say to myself, "Wow.  You're really overreacting to that guy cutting you off in traffic.  It's just the prednisone, so chill out and go about your business."  But still.  It sucks to be so crazy and to know it, and to not be able to stop it.

The original plan was to up the dose on the prednisone prior to each dose of helminths, and then ratchet it back down again in between doses, but I can tell you right now, that ain't happenin'.  Especially since my symptoms are fairly stable, I am going to continue to taper off the evil steroids and hope for the best as I take my worms.  There is just no way I can put myself (and everyone around me) through all this craziness for the next several months.

Swimming through the Helminthosphere 
I spend a fair amount of time trolling around what I refer to as the "helminthosphere," meaning the forums and websites set up and maintained by people who are either using or considering this therapy.  And I have to say that while that provides a lot of good info and support, it also can make me feel even more isolated.  For example, lots of folks talk about their "helminth bounce," a golden period right after dosing where they feel invincible.  It gets me all wound up, thinking, "I don't feel that way.  Should I be feeling that way?  What's wrong with me?"  Then there's other people who report on the "worm flu," which is a sluggishness and general malaise, which also takes place right around dosing.  Again, I don't feel that way.  Of course, I'm glad I don't feel that way, but am I supposed to feel that way?  Is something wrong?

My other issue with the helminthosphere is that, as you can imagine, people who are taking charge of their own health in this way can become quite evangelistic in their beliefs.  (Myself included.)  We're a bunch of know-it-alls about the in's and out's of not only our own illnesses, but the many and various treatments we have already tried, plus every aspect of helminthic therapy, from the providers available, to the science behind it, to the logistics of getting the worms...It can be a little overwhelming, and sometimes we forget that every one of us is on a different journey with different experiences, different motivations, different resources, different goals, etc.  In many ways these journeys are parallel, but they are different nonetheless.  And personal.  Intensely personal.  So although I know that people mean well when they suggest I get a microscope and do my own stool testing, or when they wonder why in the world I would choose to continue to take a drug like Remicade when it can have such nasty side effects, in some ways, their suggestions make me feel all the more alone with my decisions. 

The Bigger Picture
I try really hard to take what I experience with my disease and try to turn it into a bigger lesson about how to navigate this life.  So here's the upshot from what I've been experiencing lately:

• Stay objective about things that are happening TO you, but do your best to rise above.  I'm not gonna sweat the prednisone side effects, but I'm not going to let them be an excuse to act like a raving lunatic either.  I can't do anything about not being able to focus for more than two minutes at a time, but nor is it ok to take out every little frustration on everyone around me.
• I'm going to keep trying to respect other people, their experiences, and their choices.  I want to provide support to other people who are trying this therapy, or anyone who needs help in other parts of their lives, but I'm not going to try to impose my choices, my preferences, or my opinions on them.  (This one is tough!)
• Likewise, I'm not going to let other people's experiences define expectations for myself.  So what if Sally had the worm flu for 10 days after she ingested her worms but I didn't.  That's interesting info, but it doesn't say anything about how my journey is going to go.  I'm glad Billy found the specific carbohydrate diet (SCD) so helpful, but I just don't think that's going to work for me, and that's ok.

Hopefully I will have news to report soon about little worms getting settled in my tummy!  In the meantime, I'll keep fighting the good fight, trying not to be too freakin' crazy, staying supportive but not judgmental, and following my own path, not measuring myself against anyone else.  That should be plenty to keep me busy, don't you think??