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.
Okay it’s been about 24 hours since inoculation. I have been feeling kind of “out of it,” perhaps even slightly nauseous, but its really difficult to me to tell, being on prednisone (I react strongly, and often badly to it), and having to travel back to the US. I have a slight headache, but I get those normally, so nothing too shocking yet. I have had some gaseous and gurgling sensations in my digestive system, and don’t have an appetite at all really. Still I’ve had no diarrhea, which is the major symptom I’ve been told could be likely just after taking the ova. I imagine the prednisone is keeping any potential side effects at bay.
I’m awake. It’s 7:30 AM. I feel groggy, but that’s usual. I stand up, mentally going through a symptom check of my body. Everything seems ok, no green skin, I didnt grow a tail or sprout horns.
I’ve just had my morning bowel evacuation. No diarrhea. Thankfully, over the past two months by Ulcerative Colitis has been under control, and recently I had even been having almost solid stools, and only about two BMs per day. I’m so glad I didnt have to do this in the middle of a flare-up. Things seem pretty much like they were the day before. Quite undramatic actually. Now I’m headed to breakfast, I’m not hungry at all, but it’s free, and I’m not one to pass up free food. Eggs and toast, I should take it easy on my new guests.
It’s 10:02 PM. I’ve got an empty plastic vial in my hand, having just drank about 1,000 human whipworm ova. Threw it down like a shot of cheap vodka really, couldn’t help it, the reflex was still there thanks to my college days. No flavor at all. Just a very slight oily feel in my mouth. It was quick, I did not die, and there were no fireworks. For a brief moment in time I felt very strange, but quickly went back to being absorbed into some badly dubbed movie. I feel no side effects, not even a recognition from my body that anything suspicious could be going on. Although I was not currently on a prednisone regimine for IBD, I starting taking 20 mgs of the stuff the day before, in order to quell any potential reaction.
I admit I was somewhat nervous to go through with it, and I wish there was some kind of “user’s manual” or experience to read, which is in part why I’m writing this down today. For all their hard work, excellent communication, and personal sacrifice, the folks at AIT simply cannot provide me with the comforts of the medical system—24 hour “ask a nurse” phone lines, careful cautions on the side of prescription bottle, a 7 page fold out of all the “potential side effects” and cautions, drug interactions, time of day to take, exact dose, etc. No, somehow it’s better this way anyways, just a clear, unmarked plastic vial of translucent fluid. Aside from that, even in the final few hours before I drank the solution, I fired a couple last minute clarifying emails to Marc at AIT who, as always, quickly responded and placed me at ease. Although I have to admit, the final instruction to have no “cold or hot drinks” 2 hours previously or afterwards left my last dinner here with my companion rather awkward. While she savored red wine in the haze of the setting sun, I was sitting there rubbing a slightly cold glass of tap water in my hands, trying to warm it up to room temperature. Of course I recognize the silliness here, but damn it, after all this, I was going to do it right!
Now it’s midnight, still, absolutely no side effects yet. I don’t feel anything, not even a rumble in my stomach. I almost want something to happen, a gurgle, some nausea, anything to let me know its real. I’m going to go to sleep now. Goodnight, my new comrades. Sleep well because soon you must become warriors.
Hasta la victoria siempre! (until victory, always)
I picked up my “special package” today in my hotel lobby. I’m in _______ (foreign city) finally, and the weather is perfect. Sunny, mid 80’s, people walking about the downtown, lounging in outdoor bars and cafes, free concerts in the parks.
Actually getting the package was extremely easy and hassle free. Even though I only ended up giving them a week’s notice (and should have given more), AIT was able to very quickly ship out the dose to the hotel I had booked, and it actually arrived well before I did, by two days. I checked into the hotel, the polite and rather attractive receptionist gave me the keys, and without even having to ask, she noticed on the screen that I had recieved a package, went to the storage room, and came back out immediately with a medium FEDEX envelope with my name on it. No questions, just handed it over, I didnt even have to sign for it.
I brought it up to my room, and even though I didnt plan on taking the helminth ova for a day and a half, I couldn’t resist peeking inside, to see if all this was real. After more than a year, all the research, the ups and downs of AIT’s fate, the discouragement, and the waiting for months and months while AIT reassembled their lab, I was finally holding in my hand a small plastic vile of clear liquid. Held up to the light, all I could see with the naked eye were tiny white particles, seemingly thousands, floating and spinning in the clear solution. Here were my new friends.
**I thought so at least, but Marc (Dr. Dellerba) from AIT later informed me that the white particles were not ova, but rather buffer solution particulate, and that the ova were microscopic and not visible to the eye. I was HUGELY relieved to hear this, as it seemed like there were many thousands of little white particles in the solution, and I was supposed to be receiving only 1,000 ova. I was actually quite scared that somehow I had been sent far too many ova, and would end up with too many helminths. Ah, the fun of experimental medicine.
I’m on my away abroad, to stay for a few nights in a foreign city, and pick up my dose of whipworm from Autoimmune Therapies (AIT). It’s difficult to explain everything here, but essentially AIT was chased out of the U.S. by the FDA, as the FDA now classifies helminthic worms as a “drug,” which means they alone have the right to regulate who can provide it. Ironically, this is in a way recognition of the therapeutic potential of helminths, as the FDA has declared a microscopic, living organism to be a “drug.” I do not want to get into some rant about the FDA protecting potential future (and lucrative) intellectual property rights for big pharmaceutical corporations, but that’s most likely the case. Even the majority of medical and scientific researchers working on this therapy awknowledge that they are ultimately searching for a way to isolate and reproduce the chemical compounds that helminths emit that down-regulate the autoimmune response. You cannot (exactly) patent nature, but you can do so for chemical compounds. In any case, most frustrating for us sick Americans, it is only the U.S. which has taken this measure, and only Americans who must travel outside their country to receive treatment. The one exciting (?) part is that I now get to count myself one of millions who have taken a “medical vacation” abroad to recieve services that are cheaper or not available in one’s home country. I have a friend who goes to India for travel, but while there buys glasses (only $10! including eye exam, modern frames, and anti-reflection and scratch guard). Someone please explain to me how the invisible hand of the market enables this one.
I’ve been going through the usual emotional roller coaster; doubt, fear, excitement, worry, anticipation, hope, but am generally feeling pretty good about it. I’m so thankful that my family and close friends have been so supportive, as well as the good folks at AIT, and everyone in the “helminthic therapy community” who write blogs, document their experiences, and who post in the yahoo message boards.
So this is my first blog entry, but I’m starting this blog right as I am about to begin treatment with helminthic therapy, the two words that most likely brought you here in some way. My journey really began more than a year ago, when I read a New York Times article; “Babies Know: A Little Dirt is Good for You,”
which was my first exposure to the idea of the hygiene hypothesis and the first time I had heard of helminthic therapy. As someone with one of the autoimmune diseases mentioned, Inflammatory Bowel Disease, I was intrigued. Like so many others with these kinds of autoimmune diseases, drugs offer help, and at best long-term maintenance, but a future of surgery, possible colon cancer, and more extreme drug therapy always looked so damn bleak to me. Not to mention I simply was not satisfied with the lack of explanation or understanding for why autoimmune diseases like IBD occurred in the first place.
Long story short: After reading the article, I spent the rest of my night, well until 3 or 4:00 AM, googling the hell out of “helminthic therapy,” to put it plainly. The Wikipedia pages on hygiene hypothesis and helminthic therapy were of huge help, and provided a good sources to begin with. Even that first night, in my google frenzy, I stumbled across the infamous Jasper Lawrence and his incredible story. I first read his account on Kuro5hin:
but would later see it reproduced in brief in many newspaper articles and even TV news programs. I’m sure we’ll see a Hollywood movie based on his experience someday.
In any case, fast-forward to this present, and after a year of reading many news media stories, following the yahoo helminthictherapy group’s message board, reading blog posts and daily “helminthic therapy” google alerts, even reading research journal articles and many abstracts, I’ve finally decided to “take the plunge” and begin therapy. I’ve weighed the pros and cons a thousand times, and it simply makes too much sense. That’s the scary thing about this therapy actually, IF it works (and it appears it is for those who are actively trying it), then this therapy is part of a larger paradigm shift in medicine, “treatment,” and even how we think about ecology and the human body.
So, this blog exists because I want to provide another account of someone using helminthic therapy in the treatment of inflammatory bowel disease. In fact, there are just a couple blogs out there from people using this therapy, and they were extremely helpful for me in “normalizing” the idea of using helminthes to treat disease (especially the excellent blog waitingforthecure.com) Please see the blog roll for a list of related blogs.
Additionally, of the helminthic therapy related blogs I read, I haven’t found one that focuses on the use of human whipworm (Trichuris trichuria, or TTO) to treat Ulcerative Colitis, specifically. Since that’s the therapy I’m about to begin, my hope is that this blog will be useful for others with UC interested in whipworm therapy, and generally those interested in helminthic therapy.
So, I sit here, finalizing my plans, asking last minute questions to Jasper, Marc, and Michelle—the wonderful trio of Autoimmune Therapies, from whom I’ll be receiving my dose of helminths. Finally after a year of learning, of concerns, excitement, and even despair, I’ll be one more person to take the plunge into the great adventure that is the experimental (but extremely promising) therapy using helminthes to fix my out-a-whack immune system.
Stay tuned for more.