Think I'm going to try hookworms

Wow, that sounds interesting.

FinalMacGyver, yea, it does sound a bit creepy. Especially after reading that Nottingham article where it talks about the skin itching as the worms crawl in....

Really consider everything before deciding. This is a huge decision. Maybe gather more information and make sure this is right for you. Just concerned.

This is fascinating, please keep us updated!

I'm trying hookworms for Crohn's. I used www.autoimmunetherapies.com and got 10 hookworm larvae on Dec. 17, 2007. The theory is sound; they are currently doing a trial for Crohn's at Nottingham University, and I spoke with their study coordinator (Dr. Fortun) and their parasitology expert, Dr. Pritchard. He assured me of their safety (the only risk is anemia, but that is at much higher numbers) and said they've already shown efficacy for allergies. But it's early days, as they don't really understand the complexities of what the worms do, and they want to design a drug ultimately. They are basically a perfectly designed immunomodulator, without any of the side effects that other immune suppressants bring. I was going to try TSO, but the expense was extraordinary, and they were blocked by the FDA in December, so I researched and chose hookworm.

They're just starting to work. It's been a roller coaster ride though; I had the most severe reaction of their patients so far, with the lowest number of larvae. But I'm also on no medication, and came into it very sick, with inflammation in my ileal cecal valve so bad that I feared it was stricturing, night sweats every night, and diarrhea for months. I had failed Humira in August and was waiting the 90 days to qualify for the Prochymal trial. My reaction to the larvae were; gastritis the first week (though I might have caught something in travel), then I got arthritis from weeks 3 to 8 (never had arthritis before), and basically had diarrhea on and off until week 12, which was my first taste of true wellness. I'm at week 16 now, and improvements so far have been; gained 15-20 pounds, can eat WAY off my diet (low carb SCD) without ill effects, have had a few solid bowel movements, the pain in my ileal cecal valve (and the frequent blockages) was gone by week 3 and hasn't returned, and I haven't had night sweats in over 8 weeks (except when I had the flu.) I also have no bowel pain anymore, and most of my bowel movements are soft but solid, when before I started it was all D. I still have a ways to go, but so far I am pleased with my improvements, especially dietarily. (I'm eating things that would have sent me spiraling for weeks.) You can read extensively of my journey (deborawade37) at the forum for those thinking about or trying helminthic therapy;

http://groups.yahoo.com/group/helminthictherapy

The one Crohn's proof of concept study took 45 weeks before remission happened, and they started getting better after week 17. (http://gut.bmj.com/cgi/content/extract/55/1/136) That was with more larvae, though. Most people react negatively to more than 20 larvae, which is why they're only using 10 for the Nottingham study. I have heard from 2 people in that study in total remission after 6 months and 4 months.

The worms live for 5 -18 years, so if it works, you wouldn't have to do anything until then, and once you're inoculated, the re-inoculations do not cause the same negative reactions, so adding more down the line shouldn't be an issue except for skin response.

I didn't get any skin itching, by the way.

I'm going to UCSF on May 2nd to get all my blood tests done to compare actual CPR levels and such. My doctor, by the way, was very supportive of trying TSO, but had never heard of hookworm. He now has another patient trying it, so we will be two patients educating him.

I would go for it; I just wish I tried this a decade ago, if it were available. I have tried all things Crohn's except for methotrexate and Tysrabi, and though it hasn't been easy getting through the initial inflammatory period (weeks 3 to 12, though most people get only minor transient symptoms), the low risk and the high efficacy rate of these worms are worth it. Investigate the hygeine hypothesis and look at some of the emerging theories. It seems disgusting, but we have lived with parasites since humans existed, and only in the last 100 years has that changed, which also coincides with the rise of autoimmunity. Check out this MS study that shows those populated with helminths have hardly any relapses compared with those worm free: http://www.medscape.com/viewarticle/551183

Eating toast and loving it,

Wade
Crohn's for 20 years, been flaring for 2 years, 1 resection 2004 to remove descending colon, no meds but HOOKWORM!

what sounds weird to me, is if it's a study, why are you having to buy the larvae?

other than that, the theory sounds so plausible.....but another questions i have is, if most of us in civilized society no longer have these parasites, how come only a few of us develop crohn's?

So in lay terms - does this mean we have over active immune systems that end up destroying our guts and if we put worms in there it gives it something else to fight and then are guts get a break?

sounds very cool. but do they have any long term studies? What if they modulate the immune system in a negative way that no one knows about yet?

still, it's probably safer than remicade, prednisone, imuran, etc.

Please please keep posting about your results if you decide to do this.

I've wanted to try TSO since I first heard about it in 2002ish, been trying to get a study going in Canada to no avail so far. Fellow canadians, please keep mentioning these worm therapies to your GIs. Maybe we can get a study going up here soon too.