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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.

Would you like to get together in the Bay Area (California) to discuss helminthic therapy?  I’d like to invite those who either have been infected, or are interested in trying worms for their various ailments.  We could discuss the following topics:  (Please feel free to enter your topic suggestions in the comments below)

* your experience with TSO, hookworms, whipworms, and other alternative remedies

* incubation techniques, egg counting  (I can teach you how to do a McMaster egg count, show how to recognize hookworm eggs, the equipment needed, etc.)

* the legalities of this therapy.  With the recent FDA classification for hookworms as a drug, what legal rights to we have as patients?  Are we allowed to share? Are we allowed to host worms even if they are illegal to obtain?  What about children?  Do we have the right to prevent disease, or only use worms to treat disease after it’s occurred?

*alternative ways of getting the worms safely other than the commercial companies

* how to bring more positive attention to this therapy

* how to encourage our doctors to research, further the research, use us as case studies, etc.

* how to affect the FDA ruling and help the paradigm shift along

* creating an open-source, public database on our side effects, blood tests, reactions, proof of efficacy or lack thereof, etc. to keep track of our data and have a place that interested parties can see what other people are going through, their lab data, how long progress lasts, egg counts, etc.

* and just to meet with other people trying this or who would like to try it, to help normalize the whole concept of hosting worms

Please contact me by clicking on the contact link, where you can email me a personal message stating your interest.  Let me know when you are available, whether weekend or weekday is best, evening, etc.

We are all in this together, and giving each other support for our various trials and ailments would be wonderful! I think it’s also time for a robust DIY community to form. I realize most of you will not be able to come to California, just hoping there are enough people in the Bay Area interested in something like this.  Perhaps we could put up notes or do a virtual stream during the meeting, if other people would be interested in joining,  but unable to in person.

Thanks!

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This Blog

It has been brought to my attention that this blog is not encouraging helminthic therapy, but instead is harming people in posting my experience and the studies I come across.  My intention was to blog my failure or success with helminthic therapy, as I was one of the first Crohn’s patients to try it.  It was very exciting at first, when things improved so dramatically.  I felt I owed the IBD community an honest report of what it is like to try hookworms, since I didn’t have anyone else doing this before me, and would have welcomed what to expect.  Also, my doctor was very interested in my progress, and it was a way for me to corral the information I came across, so that other people could learn from it.  It seemed at the time that this was going to be an option for very sick people to get well, and the more I could do to help further this therapy, the better for all those suffering.

But my experience has been so roller coaster-ish, that I don’t know if it’s a good demonstration of the realities of the therapy.  Although each person is so different, I’m not sure there is a “normal”, perhaps this blog, since there are so few, is a detriment rather than a help to people wanting to seek out information.

I’ve had a lot of positive feedback from people wishing to try this, since they are glad to find an honest report of one woman’s progress.  I’ve been contacted by CBS, professors, a NY Times reporter, and helminth immunologists, all thanking me for my story, and I was glad to do anything I could to help promote the therapy. I’ve given enough interviews that I think I’ve done my share.  I also would much rather be known for my business (we’ve started an urban farm and underground restaurant, and are selling flowers and unusual produce to high end restaurants, and will be starting classes on gardening, canning, bee-keeping, chicken raising, etc.)   But if this blog is harming people more than helping, this hasn’t been my intention.

It’s hard, because there as so few people trying this still, and there is a desire to have a community, to learn from one another.  The incubation process is a big one – because the founders of the worm companies face such retribution from their actions, they are unable to give guidance as to how to safely incubate and reinfect, and it has been invaluable to me the support I’ve gotten both on and offline from various people.  That has been the main purpose lately for my keeping up the blog; the sense of community and a feeling of we’re-all-in-this together type of thing.

But if it is keeping people from trying to get well, then it is doing more damage than good.  This blog has been a side project that has been appealing in that the hygiene hypothesis is being proven, and we are proving it!  It’s been very exciting to be on the cusp of a whole paradigm shift.

But I’d rather people get well than be frightened by my experience, so I’m contemplating taking it down.

I’m wondering what other people’s opinions are?

So, my symptoms have been worsening for a while; a month ago, I had a slightly elevated CRP, but now it’s shot up to 12.8 (<5 being normal).  I’m having pain now daily in the ilea-cecal valve, a lot of mucus, night sweats, and loose bowel movements.  I did an egg count yesterday, and got 1050 epg, and that was with a large air bubble in the slide, so it was more or less similar to what it was before.  So unfortunately, this regression is not due to my worms dying.

Perhaps some of us need infection more frequently, that it is the infection itself that is part of the immune balancing, as well as the worms?  I also might not be at a therapeutic number for long-lasting results; I added only 10 worms last time on top of the first 10, so only 20 worms.  Some people need a lot more to get to or maintain remission.

So I’m going to try to add another 10 hopefully soon, and see what happens.  I hope it doesn’t contribute to too much diarrhea, since I’m barely progressing with the mineral repletion.  But the inflammation in my ilium isn’t going to help absorption, so it might be that in order to maintain wellness, I might regress a bit in the mineral loss.

So hard, this experimentation.  I meant to add every 6 months regardless; as things started to get worse, I should have been proactive and not let things get bad again.  But there has been so many things I’m dealing with; a new business, the anxiety/depression, mineral deficincies, etc., that I haven’t been proactive enough.  Hopefully the worms in my incubator will hatch, and I will be closer to wellness in a week or so.  I wish we knew the “right” way to infect, and what was needed for long lasting wellness.

http://www.ehjournal.net/content/8/S1/S17

I don’t know how this relates to hookworms or whipworms, but the thought before was that no pathogens could be transmitted from the parasites. This study shows that even when washed in an anti-microbial solution, certain pathogens remained and were capable of being passed on to an infected host.

It mentions mycobacteria avium was isolated from parasites that had fed on an infected host. Considering a theory that Crohn’s is often associated with MAP, one might be a little hesitant in sharing one’s infection with other parties if you have Crohn’s. Since there is little way to get testing for this organism at this time.

How does one assure oneself that the hookworms or whipworms are pathogen free, if an anti-microbrial buffer only washes the outside of the organism? I guess this is why TSO was chosen; pathogen free pigs. I wonder how Nottingham got past this, and how often and for what infections the resevoir donor is tested for?

For those DIY’ers, something to consider. And for those buying the parasites, something to ask about.

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