Just found the on-line protocol for the Crohn’s study at Nottingham University. For those of you with Crohn’s experimenting with hookworms, though most of the immune blood tests will be unavailable to us, it might be nice to follow some of the other protocol. The CRP and SED rate are taken at baseline, then at weeks 3, 6, 9, and 12. (They eradicate the hookworms at week 12, but follow up for another month.) Fecal egg counts are done at week 12. Of course, there’s also the CDAI, the Harvey Bradshaw Index (HBI), and quality of life IBD questionairre (IBDQ).
One of the frustrations I have in experimenting with this therapy, and of AIT, is the lack of diagnostic pursuit of patient’s effects. Most patients are not doing before and after screening, and often aren’t even communicating about their long-term effects from hookworms. Patient’s doses, frequency of doses, and clinical response are only known by AIT and none of the rest of us are able to access that data to learn from. I wish there was an anonymous database accessible online that would list the diseases, patient’s blood scores at baseline, side effects within the first 4 months, and when efficacy began, if it did. Although each person’s reaction to hookworm is different, the more we quantify and correlate our response, the more patterns might emerge that would help future patients. But alas, it’s not my business, so I am correlating what I find here, and when I redose in a few weeks, will try to take my own advice and do all I can to track my response to help future people wishing to experiment outside the trials.
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