Right now there is an explosion of articles on helmintherapy, because one single man had the courage to try worms independently, and do enough colonoscopies to prove efficacy.
For those of you new to this blog, I’ve had Crohn’s colitis for over 20 years, tried almost all the available western (and alternative) medications, and tried hookworms (necator americanus) in December of 2007 to reverse my severe ileal-colonic Crohn’s disease. It worked! I had many horrible side effects the first few months (see year 1 on this blog), but I also experienced gains I never had before, like the heighest weight ever (this is a good thing), clearer skin (this was an unexpected bonus) and the ability to eat foods I hadn’t tolerated in over a decade. (Dark chocolate, my new love.)
But…because I am such a sensitive soul, I only have used small doses at a time (15 worms being the all time high), and after about 6 months, my symptoms start coming back, and my egg counts decline. (Yes, I’ve learned how to do egg counts with my stool. I have a microscope, an internet connection, and very interesting conversations now with my children and friends.) You can follow all the ups and downs of losing my infections, reinfecting, etc., in years 2 and 3.
Where am I now? Still waiting. I lost most of my worms by the Spring, and was having looser stools, rectal bleeding, and my blood markers of inflammation were rising by March. Jasper of AIT had fled the country, so at first I was waiting to get new worms through him, while figuring out my legal rights on self incubation at home. (Still unclear; are we allowed to incubate our own worms and self infect, if those worms themselves are considered a drug by the FDA and not approved, hence illegal?) I was considering trying trichuris trichuira, like the man in the case study that’s getting all the media attention currently. But that option changed when I had some disagreements with AIT about their contract, so I looked elsewhere for a new worm supplier.
I reinfected with 15 hookworms in June through wormtherapy.com, had pretty bad side effects, went on Prednisone, got better. The new worms matured at week 9, I was finally improving, but since my disease is worst in my rectum and descending colon, and the hookworms have never fully resolved these symptoms, I decided to purchase TSO ( the pig whipworms) to see if they, in addition to hookworms, would work better.
They didn’t. They caused a severe regression, for which I had to go back on Prednisone. I flared for weeks, the Prednisone helped, but not fully, and finally since my egg counts had gone down after the TSO disaster, I reinfected with 10 more hookworms 3 weeks ago today, so it’s too soon to know if they’re going to work.
It’s been a very up and down affair, these worms. What I’ve learned so far, is as long as I infect before inflammation starts to rise, then I don’t suffer many side effects, and efficacy is renewed quite rapidly, within a month. If I wait until a flare has settled, then the side effects are hard, and it takes longer to recover. I think also, if I were working with larger numbers, then I probably wouldn’t have to infect as frequently; only 10 hookworms, and if 2 drop off for whatever reason, then you’ve lost 20%. If I had 35 worms, a few missing worms wouldn’t make as much of a difference.
So I am hoping to build my worm burden with a minimal amount of suffering, and get back to the place I was all last year; normal blood tests, good energy, Crohn’s mostly in remission, able to eat many delicious foods and drink modest amounts of alcohol, wanting more, but good enough.
What does this mean to the new reader who’s interested in trying worms? Well, you have 3 choices. You can order TSO through ovamed.org and they will ship the pig whipworm ova to your door. It’s very expensive, and probably the least effective parasite, but Ovamed claims they will be covered by insurance most likely by 2015. These are the parasites currently being used in trials in the US. (See “how to get worms” for more information.)
There are only 3 commercial companies available, AIT, wormtherapy, and Immunologica. AIT ships anywhere but the US and Mexico, so you have to travel to Canada to get them if you live in the US. They have both necator americanus and trichuris trichuria, and the most patients to date trying these worms. They have only one blood test on their resevoir donors to date. I have not had a good experience working with Jasper over the years, but Marc has been wonderful and helpful, taking much time to help unravel any problems you might have.
Wormtherapy offers hookworms in Tijuana. They will have trichuris trichuria soon, but haven’t worked with them yet. Wormtherapy has blood tests going back 3 years, done twice a year and will do any other blood test you ask for, providing you pay for it. Garin uses Dr. Llamas in Mexico, although Dr. Llamas isn’t very actively involved in the follow up.  Garin is responsive and helpful.
Ovamed, in contrast, was totally unavailable. My multiple questions either remained unanswered, or were answered without the correct information. I was told hookworms could lodge in the heart and cause you to die from one of the representatives from Ovamed. (Necator Americanus does travel through the heart, but only en route to the gut, never to return to the heart again.) Of all 3 commercial companies, the one legal option was the worst customer service ever, and all I gained from the worms was a flare-up and over a $2000 loss.
There are a few small trials currently available in the US, all with t. suis. You can find links for these trials in the “How to get Worms” section.
I think I’m already starting to feel better from these new worms; more solid stools, I’m getting a large appetite, gaining weight, I look a little “rosier”. I’ve been nauseous on and off; and very tired. So far, those are the only side effects, so I’m happy that this new worm dose is going well. I’m down to 10 mg. of Prednisone, though I’m still having rectal bleeding, lots of mucus, and rectal pain, so there’s much left to heal, and I’m always afraid I’m doing too much damage in waiting. I need to have a colonoscopy soon.
I may try trichuris trichuira in the future. Right now I want to get back to where I was before March of this year. I still have low magnesium and have to raise my iron levels from the miscarriage I had last year. I took iron pills from January through June of this year, but I wonder how much that might have contributed to the inflammation as well, since they can often feed the bacteria that the immune system is fighting against. I plan to eat liver a few times a week, but I still haven’t mustered up the courage. (Note I have no issue with swallowing worm eggs, but liver? Bleck!)
I highly recommend trying worms for your condition. Side effects may be a little rough. Efficacy might not last as long as you’d like. Our current commercial choices leave something to be desired, but at least these companies have had the courage to offer the worms at all, otherwise we’d have no choice but to go to the jungle and get the worms ourselves. Hopefully in the near future, there will be more competition so the prices go down and we have more commercial options. Perhaps TSO will eventually be covered by insurance.
I encourage anyone interested in trying worms to work with your doctor in getting proof. Each one of us could be in Scientific America right now if we had done before and after testing, and had the fortune to know a helminth immunologist to study us. At the very least, get your doctor interested. Ask for blood tests, MRI’s, allergy skin-prick tests. Whatever you can do to get a documented baseline. Then, in 3-4 months, if you are feeling better, do another one. Show your doctor your progress. Try to prove efficacy!
I also encourage everyone to get a microscope, learn how to do egg counts, and keep track of your infection. If efficacy is related to worm burden or egg output, this is vital information. If enough of us were doing this, we could learn so much!
Contact parasitologists in your area and see if they’d be willing to work with you and your doctor. Show them the recent articles, tell them you want to experiment with worms.
And then write about it. Start a blog. Log onto the yahoo forum or the wiki forum, and tell others about your experience. Use an alias if you need to. But if it works, by all means, tell as many influencial people as you can.
I’ve been experimenting with worms for 3 years now, and though it’s encouraging to see so much media exposure on this, I’m afraid it’s just going to die back down, and like the University of Iowa trials that happened over 6 years ago, I don’t want to see any more years go by without research proving the worms’ effects.
It’s time to rise up, people. Take your worms. And then shout from the rooftops until these worms are proven, available, and allergies, autoimmunity, and autism become a thing of the past.
We all need you to get active, people. Our children need you.  The time is now.
