I did it. The hookworms are in!

I chose combination hookworm and whipworm therapy through AutoImmune Therapies. $3900, guaranteed with free "refills" in case of die off (ie, if I accidentally kill them off somehow). The guarantee covers the expected "life span" of each worm type - whipworms are covered for 3 years I think, and the hookworms for 5 maybe... I can't remember exactly. Anyhoo, $3900 for 3 years of "meds" is just silly cheap compared to what I've been dishing out every month, so it made sense for me.

http://autoimmunetherapies.com/helminthic-therapy-worm-therapy-index.html

P.S. I got mine in the mail - I didn't have to go to Mexico like some of the "pioneers" did.

You can also get TSO (pig whipworms) from ovamed.org They cost 150-350 Euro depending on the dose, and you have to take them every two weeks: http://www.biomonde-asia.com/english/home/home.html
or www.ovamed.org for more info.

Hookworms can be bought from :
1) www.autoimmunetherapies.com Treatment is from $2900 - $6400 for multiple doses. They also offer Trichuris Trichura, or human whipworm. I had to pay $7800 for hookworms alone in Dec. 2007, so they've lowered their prices. They can ship the organisms.

2)www.wormtherapy.com provides hookworms and beef tapeworms, but you have to go to Tijuana, Mexico to get them.

If you have MS, you can participate in the TSO trial at U. of Wisconsin:
http://clinicaltrials.gov/ct2/show/NCT00645749

U. of Nottingham has finished their trial with CD and 10 hookworms, but you can inquire if they are going to do future trials: (don't know if this information is current: please update if not)
More information is available from Dr Paul Fortun, Nottingham University Medical School, on +44 (0)115 823 1038, [email protected]; or Media Relations Manager Tim Utton in the University’s Public Affairs Office on +44 (0)115 846 8092, [email protected]

Good luck!

You're so lucky to have a GI that is willing to run with this, Mag! Most medical professionals react with disgust, even though most of them couldn't tell you a hookworm from a hole in the ground. I hate to hear that you might have to wait 2 years, but I totally understand the money issue. If we hadn't gotten approved for a new credit card, I'd be waiting too. As it stands, we can just barely make the minimum payment. We call it the "worm card" because that's the entire balance. Worm payments. Who'd have thought? I hope you can get them sooner!

As far as knowing whether or not they're alive/working, etc.... it's going to be kind of tricky I guess. The biggest indicator will be my over-all well-being, but like 7007 said - she's figured out a way to do "egg counts" to make sure the little guys are still kicking. I am definitely going to have to follow 7007's lead there... I don't mind getting my own little microscope if it means no more other kinds of scopes! Lol.

For me, for now, the days that they make me feel great are enough to let me know they're there. As I (hopefully) continue to have more good days than bad, I'll probably do my own egg counts, and maybe a once a year stool sample thru my provider for an official count. That's my plan for now anyway.

Good luck to you! I hope everything works out, sooner rather than later!

patientspiders, I didn't know you tried whipworms too! How was that? How many eggs did you get? What did it taste like? I think you're one of the first patients with Crohn's to try hookworms and whipworms, so let us know how it goes!

Do you know the attrition rate for the whipworms? I heard it's higher than hookworms, so a lot of the eggs you drink don't mature. I guess a colonoscopy will be a good way ultimately to "count" the whipworm infection. Egg counts are just a rough estimate, since only the females lay, and you may have more than one or the other.

I got 10 hookworms, and I wonder how many are female? I seem to have a lot of eggs, so whatever the combination, they are having a good time!

I know it's such a strange concept for most people, but it's working for me!

------------------------------------------------------------------------------------------------
37 years old, diagnosed with Crohn's at age 16 (21 years ago)
Surgeries: 1 colon resection
Current Meds: hookworms! (10 got 2/2009) IN REMISSION AT LAST!!
Past Meds: Cipro, Flagyl, sulfasalazine, Asacol, every other 5 ASA, 6MP, elemental diet, Remicade, Humira, Xifaxin, Prednisone, LDN, Specific Carbohydrate Diet, VSL#3, S. boulardii, and most herbs and supplements...

Your GI is probably talking about TSO, (trichuris suis ova), which is pig whipworms and available from this site:

www.ovamed.org

This is what they used for the two U. of Iowa studies that are cited above. You drink the eggs every two weeks, as TSO cannot establish in the human, it is a pig pathogen.

U. of Nottingham is studying hookworms for Crohn's, but haven't published yet. Hookworms enter through the skin, and travel through the bloodstream up your lungs, then are swallowed unknowingly into the esophagus, then they migrate to the small intestine, where they attach.

www.autoimmunetherapies. and wormtherapy.com offers hookworms. AIT also offers TT, (trichurs trichura), or human whipworms. Human whipworms are like the pig whipworms in that you have to drink the eggs, then they migrate to the colon. They attach to the cecum, I believe.

I tried just hookworms for Crohn's. "Patientspiders" is trying hookworms and whipworms.

There have been no trials using human whipworm, only TSO and hookworms so far.

Well, no worms for me.  Not that I will never get them, but I saw my GI today, and I gave him all the paper work he looked through it and seemed ok with it until he saw the doctors name who is doing this. He looked him up and found that this Dr. Marc Dellerba has only ever written ONE paper about this, he does not specialize in it, and he said it was a "get rich quick scheme" for them to take advantage of individuals who are desprate at this point and will try anything.  Not to say that these worms don't or can't actually help people, but neither the company or doctor running it are credible.  He said the way they harvest the worms is not the correct way of doing it, and a bunch of other things to discredit both the company and doctor.  =/

Thats too bad, I was *really* looking forward to this, he did however say that when/if we can find a credible company that he would have no problem with it, this one just wasn't good.  Blah.

Btw, I hope nothing I just said offends anyone who is already doing this, this is what my DOCTOR said, not me. I'm going to have to go with him on this one...not just because hes my doctor but because he truly believes in this therapy if the right one is found, so I know hes not just brushing off the topic. Not only that but he has done multiple studies on it, but now his grants for funding keep getting denied. =/

Ovamed.org sells TSO (trichuris suis, or pig whipworm eggs) that they used in the U. of Iowa trials with Dr. Weinstock. They ship them to your door, and are manufactured in Germany or Thailand by biomonde:

www.ovamed.org

The only problem is they are expensive and have to be drunk every two weeks, since the pig pathogen doesn't develop in the human host. There was a case report that they found a mature worm in one boy's colon, but generally they are thought of to be safe, and I believe they are considered a pharmaceutical, so the company making them hopefully has regulatory oversight.

Your doctor is right in that the company selling the hookworms don't have any medical reputation, their lab is not monitored, and they haven't proven what dosage they are giving us, or safety in their methods. That said, I've identified what look like hookworm eggs in my stool, and had another patient get a positive O&P test from Quest stating he was infected with hookworms.

Necator Americanus, Anyclostoma, (the two different human hookworms)' eggs look identical under the microscope, and I guess there is also possibility of Stronglyoids coinfection (which also look the same?) I tested for some common co-infections (not for strongyoids though) with a blood test and they came back normal. AIT's done one blood test on their two resevoir donors (who you get the hookworms from) last year which was free of Hep C, AIDS, and the few nasties, but they should test more often.

I was going to try TSO back in 2007, but it was blocked by the FDA. I believe since there is a recruiting MS trial at U. of Wisconsin, that the ban has been lifted, so it is available. For hookworms, Nottingham did a Crohn's trial with 10 worms, but they're done recruiting. I would contact them and see if they are planning any more Crohn's studies soon. These would be the two organizations that your doctor might approve of. (ovamed and U. of Nottingham)

I took the risk with AIT and eventually got remission, but I understand your doctor's reticence and wish there were more companies willing to prove safety and with a better reputation. For now, this is all there is, and those like me have to risk their health in order to try to improve it. I tried hookworms without my doctor's approval, who had the same reservations.

It worked for me, but I would ask the company for more proof of safety before considering it. I also know of several severe Crohn's cases who dosed with a larger number of hookworms (20 and 25) and couldn't handle the side effects and had to terminate, and were worse afterwards. So I would proceed with caution, be ready for a possible negative reaction, and see if you can hang in there for a few months, as the benefits seem to kick in around month 4, if it works.

I really look forward to the day that the trials have figured out the most effective dose, the safest way to get it, and what works the best regarding frequency of dose. Until then, there's just people like me willing to risk it since our other options (Tysabri) seemed even riskier.

Good luck!

No offense taken, Mag - I completely understand and respect where your doc is coming from. The fact that he dug enough to find out what he did I find very impressive. I wish he was my GI!

We'll piece it together as we go, I guess - funded or not. Who knew Crohn's would be such an adventure?

+1, would also like to hear more.

Here's the video mentioned earlier in the thread:

http://www.youtube.com/watch?v=H0tpzODdR0c

There is a clinic in Mexico that provides this treatment for several grand ... I took a pass on this because going to a clinic in Mexico for an unapproved treatment sounded too expensive and way too dangerous!

Thanks for sharing, I'm very interested in this therapy so it's great to hear updates.

I am curious--when doing the helminthic therapy, do you have to limit what you eat and what other drugs you are taking so as to not harm the worms? Like can you also do probiotics or other supplements, things like Tylenol when needed?