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.

* 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!

I got 10 new hookworms in February 2009, then 10 more in late September 2009. My last egg count was 1400 epg. My CRP (measure of inflammation) has been normal since March 2009.  So 20 worms are working for me.  Weight’s been normal since March, I can eat most foods but still get diarrhea from too much fiber.  Now my hormones are causing anxiety/depression, but I’m assuming that’s un-worm related.   I’m almost 38 years old.

I wish we knew the ideal dosing number and dosing schedule.  It seems that those with the best response are getting at least 20-30 hookworms, though I also know of Crohns patients who had to terminate because 20-25 worms were way too much at once.  I wish these studies were faster since we’re just dosing in the dark.

The asthma study:

http://www.ncbi.nlm.nih.gov/pubmed/20030661

Experimental hookworm infection: a randomized placebo-controlled trial in asthma.

Feary JR, Venn AJ, Mortimer K, Brown AP, Hooi D, Falcone FH, Pritchard DI, Britton JR.

Division of Epidemiology and Public Health, University of Nottingham, Nottingham, UK.

One is a blog:  http://lukecology.blogspot.com/

Luke’s having a mixed response to 30 hookworm larvae; perhaps coming off the Prednisone is contributing to the ups and downs?

And a wonderful account on the yahoo forum of a female who tried 35 hookworms and is doing better than she has in years:

http://health.groups.yahoo.com/group/helminthictherapy/message/3795

If you’re someone with Crohn’s trying hookworms or whipworms, could you let us all know how you are doing?

A walking experiment, ongoing. The outcome to be determined.

So far…Mmmmm….It really is a nice sensation. Hookworms in the bloodstream. I guess they’re in the lungs right now? I wonder if I coughed while kissing my husband, could I infect his throat? These are the musing of the evening.

This was actually taken last year. I am not this thin and pale any longer. I'll have to take a contrasting shot...

It’s been a delicous week. I know I am adding nothing to the hookworm research to admit that hookworms + a glass of red wine is really quite nice.  I am so much more calm and happy then a week ago. I almost wonder if my anxiety was relating to a loss of efficacy?  The immune system, central nervous system, and gastroenterological system is interwined.

I’m expecting to come down any moment, and sink into despair again, but so far so good.

If helminths help deflect depression, it makes sense that a dozen in the bloodstream would alter the immune system in such a way to induce mild euphoria. I enjoy each day like it is my last.

I fell back in the horse manure yesterday, and communed with the dirt yet again.  If parasites can manipulate their hosts’ behavior, I wonder what hookworms do to us. A calm, peaceful happiness…fatigue that makes you want to lie back into the soil. My rational mind could google studies to explain it all, instead I watch the clouds slowly breeze by. My hair is full of straw and horse manure. My body? Bacteria and worms.

The pain in my ilium is lessening, but I am still a mucus-producing machine. I am eating things I really shouldn’t. I won’t list them here for fear of the Crohn’s police rebuking me. Let’s just say French fries are probably not on the list of easiest to digest foods. I am hungry again. All the time. One week ago was the 4th week of nausea and no appetite. What an immediate change!  I just wish my bowels would improve and stay that way forever.

No night sweats. No crying jags about nothing. No anxiety. And an ever-so-subtle rash and itch. Gas smells pretty bad…sort of a solid stool this morning. No digestive miracles.  Achey joints at times.  Achey ilium.  What else can I report?

I just wish this feeling lasted forever. Then I wouldn’t care so much that I am trying worms for Crohn’s disease, with no one else to compare notes with,  and writing about it to the world.

I joke to my husband, “You never knew I would become so interesting!” Through sickness and in health, through hookworm infection and reinfection. I wish I could just cough while I was kissing him, and not have to figure out the whole incubation process. Eeewww.

“The hope is that the work could aid the development of new treatments which work in the same way as gut parasites, by dampening down or rebalancing the immune system so that the body does not respond to allergens and trigger asthma attacks.”

“Here, the view is presented that assessment of the immunophysiological response to helminths could identify that infection with specific parasites would be therapeutically useful (although many helminths could not fulfil this role) and lead to precise knowledge of the immune events following infection, to identify ways to intervene in disease processes (in the absence of infection per se) that can be used to treat, and eventually cure, inflammatory and autoimmune disease.”

Dr. Joel Weinstock, one of the leaders in helminth therapy, criticizes operations like AIT for going ahead and giving out helminths before the research comes in:

“It is a legitimate field, but it’s been bootlegged,” said Dr. Joel Weinstock, a professor of medicine at Tufts University who’s studied parasitic treatment and is working to test the therapy. “The question is, what are you actually buying [from these companies]?”

http://www.aspheliapharma.com/

And they have a fabulous video on the use of helminths for inflammatory diseases:

http://www.aspheliapharma.com/media.html

In their pipeline, they claim that they were starting a trial for Crohn’s disease this Fall, but I contacted the CEO and he said due to funding issues, it’s been postponed, and to look for an announcement on clinicaltrials.gov for when the trial begins. So for those with Crohn’s waiting for some free TSO, it may be a while…

Oh, the selection in the hookworm market! I can a) wait and get no more larvae; if I’m not better by X amount of months I can b) get more slowly – 2 or 3 every few weeks or c) get more quickly and possibly suffer the ill effects. I’m impatient. I want wellness now. But which method to choose? I deliberate constantly.

The choice of worm burden seems arbritrary. Throw up your hands and choose between 10 and 50 worms, with no idea of how many will remain, how many at a time will “stick”, how the body will react. Worm Russian Roulette.

This study showed that 2 already infected healthy men, who added 50 worms, ended up with an immune response that basically killed the new infection, or displaced some of the old ones, so that they ended up with the same worm burden they started with:

http://www.ncbi.nlm.nih.gov/pubmed/16890593

So how many to add? Who knows? I don’t want to go back to Mexico to get reinfected. I live in the same town as Jasper, so perhaps we could reinfect locally. I don’t think this therapy should be illegal in the US – if it is proven that we as human animals are meant to coexist with helminths, then we should be able to get free worms, or just pick up a prescription in the larval section of your favorite drug store. But that is probably never going to happen. Most people will have to wait decades for the drug derivative.

But I am a walking scientific experiment. Dr. Pritchard gets the deserved admiration for infecting himself with 50 larvae as part of the dose-ranging trials of hookworm. They define the necessary eggs per gram of stool for therapeutic effect as 50 eggs/gram. All doses; 10, 25 and 50 (the woman who got 100 had to terminate due to relentless vomiting and diarrhea) resulted in the necessary egg count. I should test to see where I’m at, but I don’t know how.

Yet I’m tired, still so tired. Will more worms boost me or simply add to the fatigue? The Crohn’s study is still recruiting, so no one knows yet if 10 worms will be enough. The average worm burden in New Guinea is 25 worms, and one assumes they are gotten in little doses, starting from childhood, not 10 or 20 all at once. Which is where “trickle therapy” comes in. In an interview, Dr. Pritchard said,

“The average worm burden of a person in Papua New Guinea is 25 worms. It’s this sort of level that we think is beneficial. Whether we can mimic this in a hospital in Nottingham is difficult to say, because we’ll be giving ten worms in one dose after the person has already developed allergy. So the trial may not work this time. We may have to go back to ‘trickle infections’ where we give small numbers over an increased length of time.”

So should I try the trickle infection now, for lack of better knowledge? So many choices, just one body to experiment on. What do I do?