The hookworms are helping enormously, but it’s not enough. I still have a lot of anal mucus, urgency, and “wet farts” that I wish would go away. I just hit my heighest weight; 162 (if the scale was accurate.) I started this whole hookworm experiment at 137 pounds, so this is considerable.
I’m going to do an egg count this week. Assuming it is the roughly the same as last time, I will hit 6 months from my last dose at the end of March. It may be that I infect every 6 months until I have enough worms to keep me well. I wonder if the infection itself is part of the solution? How many people have lasted beyond a year with relief? Is the number of worms critical? Do you reach a point that a certain number of worms = efficacy, then more becomes harmful?
Assuming I can get trichuris trichura, will that help? Since I have mostly colonic Crohn’s, would the whipworms be more efficacious to my rectal symptoms? Would the combination of hookworms and whipworms be more effective than hookworms or whipworms alone? How many whipworms then to add? What would be the side effect profile if one were infected with hookworms for 2 years already?
Too many unknowns. Too much to play with. The research is slow, and we are experimenting far outside of their perameters anyway. The celiac trial infected with 10 worms, then 5 a few months later. Who chose that number? The MS trial in Nottingham will infect with 25 worms at once. And no one is using trichuras trichura in research at all. The TSO you drink every 2 weeks.
Oh, what to do. I guess I’m lucky I have the hookworms at all to play with, assuming they’re still inside me, which I’m sure they are because of my symptoms. Just had a solid bowel movement, with no pain, after sleeping through the night (though I am having to wear panty liners now to catch the drip.)
I am just so sick of this experiment, I want to be fully well. But I’m working on being thankful for what I’ve got. The scientific spirit lives on, and I must keep experimenting on myself until I get as close to total wellness as I am able.
I still remember perfect health. I’ve got the body of an athlete, if only it is given a chance to right years of wrong. I may never achieve that, but I’ll be damned if I give up trying.
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I think you should consider trying a small or medium dose of human whipworm. Marc was telling me that they interact specifically with the mucosa of the colon for a localized effect. I have ulcerative proctitis (almost all my inflammation is in the rectum/anus). Of course, I’ve also been told at various times that I have UC, and also “crohn’s-colitis”.
Make sure your symptoms have stabilized, so you can make sure that when/if you add whipworm, any benefit is thanks to them.
Plus, I hear that you “should” feel the effects of whipworm relatively quickly, within a few weeks as opposed to months with hookworm.
Although, I’ve been waiting months for AIT to ship me a dose of whipworm, and I realized they’ve been through trouble, and I’m willing to drive into Canada to get them, it still seems that they’re not up and running yet. Marc still tells me they’ll be shipping whipworm soon, so I’ll continue to wait, there is no other source.
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I was planning on trying a dose of whipworms but then I got pregnant, and then Jasper had to flee America, so I missed my chance. They keep saying they will be shipping it soon, but it seems like they haven’t been able to find a place to start the lab?
I wonder about the attrition rate as well? How many patients have they had trying it now? What is the best dosing schedule? How many ova are infectious, and from those doses, how many attach and stay in the colon?
Though I sympathize with AIT’s plight, I’m frustrated by the lack of answers to these questions, and the veiling of data. It would be nice to know what other patients are experiencing, and what efficacy they are getting.
What it’s really time for is multiple safe sources, and a growing data set that is unconnected to a commercial company.
Until then, I’ve got hookworms for now. If anyone finds an alternative source of whipworms, let us know.
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Unfortunately, there are even more unknowns with human whipworm than with hookworm, and almost no scientific studies/data available. From what I hear, it appears (based on AIT’s data) that only about 15% of the ova survive and attach. And it seems unclear how long they live, between 1 and 3 years, or more? Although this is far, far better than pig whipworm (and cheaper), not to mention probably more effective given the fact that pig whipworm die within 2 weeks, while human whipworm can mature and live ‘long happy lives.’
I’ve been emailing with a biologist (I wont use the name here) who is currently hosting a high number of whipworm for UC, and he seems to be doing well, and knows a lot about the experience as he has been self-experimenting with dose, etc (through AIT I believe)
I plan on taking one big dose of whipworm (recommended by Marc), given that I have to drive out to Canada for it. I hear the side effects are not bad except for a day or two when they molt about two weeks in. Once they’re all settled, I may try a second dose if I’m not having good enough results.
For me, the most frustrating thing is not knowing how many survive, and have no good metric for measurement (although at least one can do what you do, the mcmaster counts)
I still have much to learn, but am determined to give this a shot, of course, once AIT is ready. To their credit, Marc has been in regular contact with me, even though they have had continuing troubles. So I wait and hope.
Ultimately, I would like to host hookworm as well, as it seems they work more systemically while whipworm work more locally.
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