Constant Fear

You’d think, now that my blood tests indicate remission and my symptoms are approaching that happy place, that I would feel calm and without fear.  I have finally found something that works!  Hookworms are safe (the amount I have, anyway), I’ve gotten through the dreaded initial inflammatory reaction, I can eat most anything!

I am well.

But there is a constant fear.  It came from two decades of disease, but a lot of it is the nature of this therapy, and the fact that we are trying it without much help, approval, or knowledge.

I lost my worms last year and don’t know how or when.  That’s a difficult place to be in.  I wasn’t sure they’d work again if I redosed, but they did, thank God.   But what could kill them again?  We know a little bit more; certain anasthesias should be avoided.  But some people had anasthesia and kept their worms.  One person only had a tetanus shot, and lost all of his hookworms.  But others wrote in to say they’ve gotten vaccinations no problem, and still had worms.  So what made this patient lose his worms?  Who knows?  I don’t feel much confidence.

If I lose my worms again, I should be able to reinfect and gain efficacy.  But I am dependent on one company for hookworms, and even then, if I say something here that is construed as negative against that company or the therapy in general, I am accused of biting the hand that feeds me, and risk jeopardizing my worm source.  Must I remain mute since there are so few providers?  If I criticize the provider, then no one will want to try this therapy, someone pointed out.  What if I bring unwanted attention to the company, and they are shut down because of me?  Then tens of thousands of people stay sick.  This is too much responsibility.  If we had multiple safe sources of worms, I could write anything I wanted to without fear of recrimination.

And what happens if the company decides I am no longer worth the trouble of supporting, and reinfection is denied?  Or a new price is put on the worms that I cannot afford.  Or a new contract is revealed that I must sign, even if I do not approve of what I am signing.  Or the FDA finds them and closes down the lab.  Then I’d be left with the only other company, who treats in Tijuana, to a tune of thousands of more dollars I do not have.  I’ve already spent $8000, I am in so much debt my credit has been reduced to nothing, so this option would only be possible if I got a family loan.

So I frantically research incubation. I still have eggs the last time I checked, but may not in a week.  Hurry, hurry!  But in order to provide me with reassurance; another source to get the hookworms from, I have to go against my contract and infect someone else to create a “resevoir donor”.  So I can’t tell anyone, or I may get sued.  We really need multiple, trustworthy sources of infection, but the original source prevents people from doing this, so we are eternally dependent.

What is supposed to live naturally in our human ecosystem is controlled by modern commercial enterprise, and I am stuck in the unfortunate position of silence, illegal activity (which the whole thing is anyway, seller of worms included), and just the weirdest therapy that I ever could possibly write about.

So if I had 5 reliable resevoir donors, who I could contact at any time I lost worms, trust they’d share with me safely, I’d feel a lot less nervous.  But then that would just bring me to the next fear, which is:

How long will this work?  Will the immune system eventually override the worms’ effects?  We know worms prevent disease, but we are the first to experience longstanding autoimmune disease, then putting the worm back in, and seeing if it will balance the immune system.  It’s working, but will it forever?  So far, I only know of a small handful of people trying this past 2 years.  It seems like if enough of a worm burden is maintained, then efficacy is maintained.  But only time will answer this question.

And then the next one; how many worms is enough?  How often should we reinfect?  And this, you’d hope, would be answered by all of those that have gone before.  But really, the companies doling out worms have the best answer to this question, if there is a best answer.  Nottingham has only tried 10 worms, so has no idea what 25 will do yet.  They only trialed the worms for 3 months, so they don’t know how long they will last, or the ideal infection rate.  These answers will take years in coming, and in the meantime, we just get to blindly experiment.  And only the two companies are finding out some answers to these questions, but as the information is not shared publicly, we still have no idea what the answers are.  So few people choose to write about their expeirences, that we just get small snippets of information, and mostly we are left blind.

And so, I am left in constant fear.  Having very little answers, almost 2 years into trying this therapy.  At some point, Nottingham will publish all of their studies, we will have many people who have tried this contributing to the pool of knowledge (I hope), and we will have multiple, safe sources for worms.

Until then, I have no assurance.  I work to get a space ready for incubation, I talk with a growing body of people who want to start an independent worm co-op.   As the science of this therapy gains momentum, enough people will be interested in answering these questions so that the people trying this after us will have more answers, resources, and safety.  But it is early days.  And we are few.

Until then, it’s me and my worms.  For however long they last.  For however long they work.  I wish I could feel more comfort with the whole thing.  Exalting in my wellness.

But I don’t.