worms and the law

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Right now there is an explosion of articles on helmintherapy, because one single man had the courage to try worms independently, and do enough colonoscopies to prove efficacy.

For those of you new to this blog, I’ve had Crohn’s colitis for over 20 years, tried almost all the available western (and alternative) medications, and tried hookworms (necator americanus) in December of 2007 to reverse my severe ileal-colonic Crohn’s disease.  It worked!  I had many horrible side effects the first few months (see year 1 on this blog), but I also experienced gains I never had before, like the heighest weight ever (this is a good thing), clearer skin (this was an unexpected bonus) and the ability to eat foods I hadn’t tolerated in over a decade.  (Dark chocolate, my new love.) Read the rest of this entry »

My slides:

http://openetherpad.org/deborawade-bter-slides

My talk:  (numbers in parentheses are the slides)
(1)My name is Debora Wade and I have had Crohn’s disease for over 20 years.  Since December of 2007 I have been experimenting with helmitherapy.  In other words, (2)I have approximately 15 of these hookworms living in my small intestine as I speak. Read the rest of this entry »

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.

Looks like Jasper of AIT can’t ship hookworms or whipworms to the US because of legal reasons.  Wormtherapy is still offering hookworms, but you have to go to San Diego then Tijuana to get them.  I’d like to collect an aggregate of information on hookworm incubation methods here, so we can learn from one another’s mistakes and triumphs.  What I’m finding is most people need to dose way more often than once every 3-5 years.  I’m only dosing moderately (10 hookworms at a time) and I’ve had good effects for about 4 months, then things decline.  I’ve also heard personally from others that about the one year mark, things start to go downhill.  I’m sure it depends on dose and disease, environmental factors.  Of course, I’m not in touch with the vast majority of people trying worms, but the more we can learn and understand about this and share this information, the better.

I will be trying to incubate again this week.  I will share my methods of success or not.  Meanwhile, here is another place where someone is experimenting with incubating hookworms.  Let’s help one another, shall we?

Update:  someone suggested two links for incubating instructions.  The first:

http://www.mja.com.au/public/issues/178_02_200103/lan10157_fm.html#CACJFHGC Read the rest of this entry »

Looks like Jasper fled the country so I have no idea what this means for current and potential future patients for helmithic therapy. I wonder to what extent the FDA was going to pursue persecution, but by his actions, I imagine things weren’t going to look good.

I wonder for myself, what posting an Incubation 101 would mean to me.  It is just the sharing of information, and from what I understand, I believe my first amendment rights gurantee I can say what I want.  I am not selling or distrubuting the organism, but are we legally allowed to be working with an infectious organism that is considered a menace to society?  (Or used to be, but the research is still a hypothesis at this point.)  Many of those in the Nottingham and recent celiac trial elected to continue hosting their hookworms, but they may be protected under the protocol of being in a scientific study.  We are not.

Does anyone know what we are legally allowed to do here?  This is such a grey area, I doubt there is a helminthic therapy lawyer out there who could advise us. The problem is, we need someone besides ourselves to be hosting the worms in case we lose them accidentally.  So that would involve infecting someone, and among consenting adults, is that acceptable?  We can do fecal transfusion enemas, so in essence, we’d be sharing potentially infectious organisms there, but a worm is a whole new thing, especially considering we could contaminate the garbage collector if we do something wrong, and needless to say, we have to be weary of where we leave our feces.  Are chemical toilets adequate?  We couldn’t camp and go to the bathroom in a hole in a warm, moist environment.  Can anyone think of ways that we can protect ourselves and continue to experiment with this therapy?  Should I be paranoid and take this site down?