Wednesday, November 3, 2010

You're going to do WHAT?!

In just a few weeks, I will embark on a trip to Vancouver, British Columbia, to take the next step in my treatment for ulcerative colitis.  I am going to acquire a whipworm parasite.  Also known as "helminthic therapy," parasite infestation is admittedly a little "out there" in terms of medical treatments, but I'm rarin' to give it try for two reasons: 1. The more I've learned about it, the more I realize that the risks and potential benefits are not much different than many of the other treatments I've tried, and 2. I'm at the end of my rope.  I need a game-changer, there are not any other options, and I am seriously demoralized by the ongoing battle of daily diarrhea, gas, rectal bleeding, severe cramping, mega-medications, et al.

I spoke with my gastroenterologist about my plans and he was aghast.  We really talked around the issue, but he just kept coming back to the same conclusion: "But you'll have a PARASITE!"   And he's not the only one who feels that way...pretty much everyone I tell about this treatment falls somewhere on the spectrum between polite smiling and nodding to outright incredulity at the very idea. 

But I think the theory for this treatment is fairly solid: for millenia, humans evolved right alongside the whipworm, and these little fellas lived in our guts and helped regulate our immune systems.  I've heard one doctor say they give out-of-whack immune systems like mine something appropriate to focus on, rather than launching the full-blown attack on completely imaginary invaders that's going on right now.  (Of course, this is totally simplified.  For a better description, maybe you'd like to visit the Autoimmune Therapies website.)

In a corollary to what is called "the hygiene hypothesis," as Western society has become more industrialized, helminths are much less common here, while the incidence of autoimmune disorders continues to rise at an alarming rate.  In less developed countries, where helminthic parasites are still common, diseases such as lupus, ulcerative colitis, arthritis are much less common, even unheard-of in some areas.  Yet, in countries that are following our lead into industrialization, these diseases (along with a host of other problems, to be sure) are becoming more and more common.

This treatment has been studied quite a bit, most famously by Dr. Joel Weinstock at Tufts University, and has been successfully used to treat asthma, MS, lupus, and yes, ulcerative colitis and Crohn's disease. Should something go wrong or I change my mind about the treatment, I can eradicate this parasite with a single dose of a powerful antibiotic.  An infestation of whipworm is considered such a mild condition that the CDC recommends AGAINST treatment for people who contract it the old-fashioned way.  (That is, accidentally!)

But what tipped the scales in my decision to take this action is reviewing all times I've already been at this precipice of deciding about a new treatment.  When I was first diagnosed, I was put on heavy doses of prednisone, a steroid that we know is pure evil in terms of what it does to you long-term. These days, I am on a low dose, but still fear the consequences.  What about azathorprine, which has a fairly long track record in treating u.c., but is linked to increased rates of lymphoma, especially when combined with other drugs?  I take it every day.  Then there's Remicade, a treatment I resisted for months because nobody knows what it does long-term, except that it probably raises your risk of contracting certain kinds of leukemia.  Yet, in the never-ending quest to get better, I started on a regimen of one infusion every 8 weeks several years ago and am now up to one infusion, at the highest allowable dose, every 5 weeks.  All this, and what I get in return is feeling like my disease "moderate to severe" rather than "severe." 

So here's what it comes down to.  On the "pro" side, we have the potential for feeling better, taking fewer medications, spending less money on treatments, spending less time coping with symptoms, and generally regaining a sense of control.  On the "con" side, I will have a parasite.  A parasite that can be eradicated with a single dose of antibiotics, if I change my mind.

What would you do if you were in my shoes?  I say, "Sign me up!"

5 comments:

  1. Well, if this theory behind this therapy is correct, and it works as it seems to, then these 'parasites' can actually be considered symbiotic organisms--in that they provide a benefit to the host and as the host provides a benefit to them.

    Go team worms!

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  2. Heh, it certainly makes for interesting holiday family conversations. I find that people react well to the idea of the therapy IF I can sit down over a coffee or lunch and explain it.

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  3. Where in BC Canada were you able to get helminth therapy for your UC? I am ready to go.

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  4. HI I was wondering how this treatment worked out for you! Also, could you please let me know who in BC you contacted? I currently reside here and would love to find out more. Thank you!

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    1. Hi, Piya. A review of my more recent blog posts will give you a fuller picture of how this treatment went for me. In BC, I connected with an acquaintance who was able to receive the shipment of worm ova for me. There is (to my knowledge) no provider in BC, but you can receive the goods via mail to a BC address. Check out the AIT website for more info about the provider I used.

      Good luck!

      N.

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