I have Crohn’s disease.  One of the inflammatory bowel diseases (IBD) that now affects 1 in 250 Americans; there is no cure.  I have suffered for over 20 years.  IBD is classified as an autoimmune disease, where the body is attacking itself.  But a new theory is emerging.  Dubbed the “hygiene hypothesis”, or more correctly, “the old friends’ hypothesis”  where reduced exposure to certain infectious agents causes the immune system to malfunction, it explains the rise in allergies and autoimmune disease as countries switch to more sanitized living.  But some scientists are going one step further and noting that the absence of helminths, or worms, are part of the problem.  With improved sanitation, we have removed an important part of our inner ecosystem: the parasitic worm. What would happen if we put the worm back in?

So far, in the mouse model,  helminths have shown to ameliorate asthma, MS, type 1 diabetes, and IBD.  In humans, the ova of the pig whipworm (trichuruis suis ova, or TSO) caused 21 of 29 Crohn’s disease patients to go into remission.  13 of 30 patients with Ulcerative Colitis showed improvement compared to 4 of the 24 placebo group.    Studies are underway at the University of Nottingham to test hookworms in allergic-rhinitis, asthma, and Crohn’s disease.  MS trials with TSO and hookworms are pending. Helminths are believed to bring the part of the immune system that is tipped out of balance into a less reactive state, in order to ensure their own survival.    The research is intriguing, but what’s a person with Crohn’s disease to do- right now?

In fall of 2007, I  had finally run out of options.    I  failed the last good medication my gastroentrologist had to offer, and I had to wait 90 days before I was eligible for trial medications. I was housebound, emaciated, had chronic diarrhea, night sweats, and painful bowels.  I had already tried diet and most alternative supplements. I could digest little but blended soup.   I was aware of the research on TSO, so my doctor and I decided to order some pig whipworm eggs to tide me over until the trial.  The thought of drinking pig ova  wasn’t appetizing, but I had already had my descending colon surgically removed 4 years earlier, and was willing to do anything to stop the inflammation and the pain.

But it didn’t turn out to be easy.  The FDA had temporarily blocked importation of TSO, citing fears of transmigration, and it wasn’t expected to be available for several months.  Even so, the cost was enormous.  $4700 for a 10 week dose, just to see if it worked.  It was not covered by insurance. And one had to drink the ova indefinitely, since the pig whipworm cannot reproduce in the human host. The dollar was dropping, and I envisioned a future of enormous debt.  So I turned to the University of Nottingham.  They are currently conducting a double-blind, placebo controlled trial using 10 hookworm larvae for Crohn’s disease.  I wrote to Paul Fortun, the study director, and asked if an American could participate, and how often I would have to fly to England.  I was really too sick to try.  But I was becoming desperate.

While waiting for his reply, I stumbled across a website selling hookworms. For $3,900 one could travel to Tijuana, Mexico, and get purposely infected with up to 50 hookworm larvae.  It sounded like a medical horror story.   There was no research institution providing oversight, no ethics committee.  The company claimed that a medical doctor was involved in the treatment, and blood tests to rule out anemia and pregnancy would be conducted before the patient received the larvae.  It could be an enormous sham.  I decided to investigate.

I spoke with Jasper Lawrence, the CEO of autoimmunetherapies.com.  He told me he put his allergies and asthma into remission using Necator Americanus (the south American hookworm), and decided to start a company so that other people with autoimmune diseases could have the same opportunity.  I was skeptical.  Hookworms require an incubation period outside the human host, so they cannot reproduce inside the intestines.  As long as I used a toilet, I couldn’t infect my family. The life-cycle of the hookworm involves a human defecating in soil with the correct temperature and humidity, where the eggs hatch into larvae, molt and go through several stages before they become infectious.  Then they enter the skin and swim through the bloodstream, past the heart, up the lungs, coughed into the esophagus and swallowed.  The larvae molt 2 more times before they mature into adults, where they latch onto the small intestine, and suck your blood.   I was considering this?  My family thought I was insane.

The advantage of the hookworm is it lives an average of 3-7 years.  So  the assumption is if the worms work, they should continue to do so as long as they are alive.  The thought of not having to drink pig whipworm eggs every 2 weeks, or even swallow another pill or take another shot, was too tempting. The trial medications I was waiting for had cancer risks.  I had already spent the summer giving myself painful shots of Humira, one of the new class of biologic medicines that are the cutting edge of IBD therapy.  They come with risk of severe infection, and possibly contribute to several cancers.    I had suffered severe nutropenia in the past from 6MP, the other leading IBD immunosuppressive.  So I was used to therapy with risk.  A few hookworms seemed like nothing.

Nottingham replied that I could participate in their trial, but it would require 6 visits over 6 months’  time, and I had a 50% chance of placebo.  I couldn’t imagine making one flight.  So I wrote to patients of AIT, read up on the risks of hookworm (anemia in large numbers, possible coinfections), read the Yahoo forum devoted to helminthictherapy.   My doctor warned that I could get anything in Mexico, and did not support the company providing the worms.  But he would treat me regardless. I had no great options.  I booked my appointment.  And prayed.

It is a condition that many patients find themselves in.  The research is emerging.  We read about cutting edge therapy.  But it is unavailable for several years, often decades.  To wait means losing more intestines, suffering years of debilitating disease.  Modern medicine is full of triumphs, but for many of us, the medications are not enough, and our experts in the field can only turn to us with hands held empty, leaving us to suffer alone.

I received 10 hookworm larvae on a band aid placed against my forearm, and this story has just begun.  While the rest of the world awaits for the hygiene hypothesis to be rigorously debated, for the studies to examine the efficacy of returning parasites to a dysfunctional immune system, some of us need to risk everything to end our pain.  I look forward to the emerging research on helminthic therapy… with a belly full of worms.


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