Week 4: Nottingham Trials

I just got an email from Nottingham. Inviting me to be in their Crohn’s disease trial, though they realized that distance could be a problem. The English was so proper:

“Whilst we would be delighted to have you participate in our trial, the tyranny of distance seperates us.” I don’t think I’ve ever used the word “whilst”.

Oh, the comfort of being in a study; to be able to go to a doctor right now and have him know what he’s doing, knowledge of the treatment. Someone to give me comprehension and assurance, expertise! Especially if he spoke like Dr. Fortun. I would have at least felt well taken care of.

Instead, I’ve got the snarl of Dr. Terdiman. What else have I caught in Mexico? My UCSF post doc dropped me after visiting the ethics committee, who wouldn’t condone a Tijuana clinic without any proof of the safety or lack of pathogenicity of their worms. My local doctor thinks I’m brave and vaguely remembers reading some article on parasite proteins. I feel so alone.

No one but Dr. Pritchard really knows what’s happening to me. I emailed him to ask if he’s ever seen someone develop arthritis from a light hookworm infection. Never. I’m so fucking unique. Maybe there’s a pathogen that came from Jasper’s sample? I still haven’t seen the paperwork on the resevoir donors, so now I’ve got reactive arthritis, oedema, or whatever this is to add to the worry list that I’m just supposed to trust will go away.

I just wish I could stop having unusual reactions to things. Or when I do, have someone tell me exactly what went wrong. Not, “it may be an allergic reaction,” or “we don’t know what’s happening to you, possibly you have latent RA?” I just want to know what to expect sometimes. A longing for some pattern to cling to.

I chose 10 hookworms to minimize my symptoms but it hasn’t been minimal at all. At least I was wise not to get 50, but I just want someone to go to for reassurance when I wake up sore and tired.

I don’t know what to write back to Nottingham. Sorry, but I already found me some hookworms. Whilst I just payed the equivalent of your required 6 visits to England, I cannot afford to get the placebo. So I am all alone with 10 hookworms doing God knows what, with no support.

I want to sit down in an office with an expert. Who actually knows volumes more than me and can fit me in the larger puzzle of decades of experience. Who’s written papers on Pub Med. If I could only travel to Nottingham with my worms already in me, have them take a blood test and explain to me everything I’m going through. Tell me what the next few months will bring, and what precautions I should take. No mysteries. No bizarre symptoms. Everything previously studied and predictable…

“Oh yes, this can happen. It should go away by week X… Whilst it can be unusual, some people’s allergic response can manifest in this manner…” My lovely English dreams.

Instead I’m here, in this small town. With a forum of novices, no doctor who understands what I’m doing, and no expert to tell me I’ll be OK. How I wish I went to Nottingham. Perhaps one day.