It is now 8 months since my last infection with 10 hookworm larvae, and I am steadily going downhill. Now pain is a constant, I saw blood yesterday for the first time, I’m going to the bathroom a minimum of 5 X a day, mostly loose or diarrhea, and I’m nauseous on and off, have very little appetite, and have now lost 10 pounds. Can I just say I hate this disease?
My last 2 incubation attempts have been fruitless. Only the first sample with tap water was successful, and by successful I mean there were a total of 5 active larvae; the rest were immature and dead, or mature and dead. While trying to pick up 2 of the larvae, they stopped moving, and seemed to die, since nothing, poking or wiggling, revived them.
I managed to pick up a few larvae and pipette them into a petri dish. I gave myself two, but didn’t really feel any skin penetration. I thought I felt better for a few days, but it was also when I was ovulating, so it could have been that. The next sample I used spring water, and there were only dead worms. The third, with distilled water, had no worms at all. I did another egg count, and had plenty of eggs, in fact, the same that I’ve had since about 6 weeks from the last dose, so my regression is not due to a drop in egg production, or worms dying. Perhaps some male worms died, but the females are laying as strong as ever, so I don’t know what the hell is going on, except the theory that Crohn’s needs more often stimulation, and that the infection itself, or the new worms are part of the necessary immune stimulus.
I am bolstered by the eggs in my stool, however. I will figure this out. I have one petri dish with just vermiculite and distilled water in it, to help determine if the thousands of one celled organisms that look a little like protists, or cilliates, are from vermiculite contamination. I have another stool sample mixed with just sand and distilled water. Then a third, with tap water, vermiculite and stool, since this was the only sample so far that yielded live and wriggling larvae.
Each week of failure is another week of misery. But I know the worms help, and I’m hoping another dose of 10 or so will get me back to a good place for a while.
I have been so harshly criticized for this blog that I considered taking it down at one point, but then I’ll get other messages from people thanking me so much for my information, that I continue. The community that is now forming of people wanting to do this themselves is so valuable. Jasper has done an enormous service for people, both in offering the worms and getting the publicity out there, but people rightly want to independently infect themselves, and now there is a wiki just formed on helminth therapy that you all should help contribute to. I’ve had several people respond to the Bay Area Support Group idea, and we are helping one another with incubation, egg counting and harvesting techniques behind the scenes, which is incredible.
When I first started this blog, my intention was to log my journey with hookworms, and I apologize for how up and down the whole thing has been, but that’s the way it’s gone. I haven’t ever reached remission in terms of symptoms, but I’ve reached pain free living (which is why it’s been so hard to have pain again for the last few months!), and certain things have gotten incredibly better, while other things have gotten worse.
Anyway, I still encourage everyone to try this, but the expectation that you will only have to infect once every 3-5 years is unrealistic. I’ve been in touch with at least 5 Crohn’s patients who maybe get to the one year mark, then have to reinfect. Human whipworms seem successful for the very few UC’ers who’ve responded on the yahoo forum, but the data is scant. I have heard that wormtherapy now offers human whipworms, so there are now multiple sources for either worm.
Anyone with incubation tips, please send them my way. I’m back on the Specific Carbohydrate Diet, with lots of probiotics and I’m just trying to hang in there until I get some success in the laboratory. If a few weeks go by and I still haven’t managed to isolate infective larvae, I may have to borrow some money and purchase a new set of worms, but I’ll cross that bridge when I get to it.
I’ve got a huge performance on Saturday, and it really sucks how sick I feel. A pad in my underwear to catch the drip, and some good marijuana will probably get me through, but God it sucks trying to live your life when you are ill, and though I have 22 years of experience, it never gets easier.
