I’m so Bored with the USA

Very trying times in helminthic therapy-land.  Symptoms have rapidly been going downhill.  I’ve now felt nauseous for about 2 weeks, lost 5 pounds, and have had diarrhea mixed with soft stools for many days. Because of this, all progress on the magnesium front has reversed, and I am twitching away, bad as ever.

I need more worms, I assume, though my egg count hadn’t dropped by much last time I checked.  But these same symptoms happened after about 6 months from a dose last year.  This time, it’s been 8 months, last year I infected at month 7 before things got this bad.  Maybe next time I’ll be proactive and infect at month 5 or 6…I always have some bad reason for waiting.

And now, because of the FDA ruling on hookworms as a drug, I can’t talk about incubation.  I don’t have a level 2 lab, which means I’m not allowed to work with infectious organisms.  So I can’t discuss how tap water probably killed most of the first sample.  The excitement of seeing live organisms.  The frustration of trying to pick them up and losing them again.  All the dessicated and sad looking larvae.  The 3 I managed to pick up, and what I did with them. Decontamination techniques. What the hell those round, swimmy things are and should I be worried?  How nice it would be to share data with other worm farmers and not risk hefty fines or jail time!  As it is, the last paragraph was all a dream…

We scuttle together in the privacy of cell phone conversations.  We compare reactions, and try to make sense of it all.  We meet in private and learn from one another, scared that we will get caught.  Persecuted for daring to try to make ourselves well.  The Lowly worm, such long reaching consequences.  At least TSO will be in multi-center trials soon, and some few hundred people can try worms for free.  That data will be logged, published, and hopefully one day we will get pig whipworms under a prescription, know what dose to take, how often, and for how long.  Meanwhile, the hookworm trials crawl along, and the rest of us are left struggling with how to put the worm in our hands, and keep ourselves well.

I hastily try to reinfect before I have nothing to infect myself with.  But sshhh…

I’ve been asked to play bass guitar in a band who’s playing 5 Clash songs in two weeks.  I said yes, though I’m kind of rusty, and I feel like absolute shit.  Hoping that I can reinfect before then, so I won’t feel like throwing up or having urgent diarrhea during the set.  It feels pretty awesome playing “London Calling” until you have to rush to the bathroom with mucus in your underwear.  I’m tempted to tell the band,

“Hopefully I’ll get some hookworms in me before June 5th otherwise I’m not sure I can make it.”

As a female bassist, it would sound pretty bad-ass.   A hookworm rash would just add to the mystique.  It sucks having Crohn’s disease, you never feel like you can promise anything in the future because you have no idea how you’ll feel.  But I’m bold.  I said yes because I’ll be damned if this disease or this therapy gets in the way of my life.  I’ve had enough of that already.

There will be a few hundred people, and I HAVE TO feel better before then, and hookworms are all I’ve got.

I just wish I could talk about it all.  My blogging days are numbered.  We will have to wait for a cure in secret.  I’ve gotten in too much trouble already.  The last thing I need in my life is another rude email or a knock on my door.

“FDA.!  I hear you have an illegal lab.”

“I’m not selling anything.”

“You have the right to remain sick.  You have the right to an attorney to help explain to the judge and jury that you need to illegally breed an infectious nematode to keep your Crohn’s in remission.  Your doctor doesn’t sanction this.  Your provider’s already been run out of the country.  Prison food will make your Crohn’s worse.”

I’m getting too dramatic.  Got to go stir my potion.  And practice “Straight to Hell”, which some would imply is where I’m already headed.

  1. Percy’s avatar

    Don’t worry, it took me ages to figure out how to grow my own. It just takes a bit of patience and a lot of luck. Eventually you’ll get there, you’ll feel better, and it will all see like a bad dream.

    I’m going to go out on a limb here and say that I don’t think the FDA is actively trying to stop individuals producing hookworm for their own use. I mean, has anyone actually faced any charges for producing hookworm?

    I doubt that there are going to be swat teams breaking in your bedroom window anytime soon.

  2. Leo F’s avatar

    I too, do not believe that the FDA or other agencies have any imperative to censure or prosecute you for speaking about an organism that will be confined to your house. They would just look like big bullies if they put the frighteners on you.

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