Helminthic therapy, hookworms, whipworms and how I achieved remission from Crohn's

I can get the links to work either.

The problem is; do we know if it works longterm? Helminthictherapy is in the first rush of efficacy, but will it last? I tried hookworms in late 2007. I started with 10 and had bad side effects, (reactive arthritis, edema, fever, diarrhea) but I started having less instestinal pain and gained weight, so I stuck with it. By month 4, blood markers of inflammation had returned to normal, I'd gained 20 pounds, and went from 7-10 painful diarrheas a day to 2-3 soft stools. I have ileal-colonic Crohn's.

But I experimented with "trickle infection" trying to raise my numbers. We did 2 worms weekly, and that made me lose efficacy (probably extended the initial inflammatory reaction hookworms can cause) and possibly influenced my immune system to expel the first worms. I went the rest of the year steadily getting worse, and by December, I had lost my worms completely.

I reinfected last year in February with 10 hookworms again, and this time I had no side effects, and inflammation and pain was gone within a month. I was so pleased that infection levels coincided with efficacy, and I believed that once I had the worms, they should live for a few years, like promised. However, I got a good 5-6 months and symptoms started to come back. I learned how to do McMaster egg counts, and I noticed a decline in egg counts around this time. So I reinfected again last year in September with 10 more, and was better again within about 6 weeks.

Again, I had no inflammation for about 5-6 months, then in March of this year, pain and symptoms started to creep back. I never lost the mucus or urgency, but I was sleeping through the night, had a lot of energy, and was having near normal blood tests, so it was "good enough" for me. People said I looked better then they'd ever seen me, I started being able to bike up hills, exercise, etc., and my skin was a lot clearer, so there were a lot of systemic benefits, even though my colon wasn't completely healed. I could also eat a wider variety of foods, but still was reactive to fiber like lettuce, kale, etc, and got mucus with a lot of fruit, and also diarrhea.

I was going to try TT in march as well as get another dose of hookworms, but I have a blog; waitingforthecure.com and some of the studies I found that showed potential passing on of pathogens invoked a lot of responses, many from AIT's competitor, wormtherapy.com
Jasper became angry at this (and we had a past relationship with a lot of disagreements) and he said he'd never provide TT for me, and would only give me one more dose of hookworms if I lost mine, which I hadn't, they just had decreased in number to a couple of eggs in my test, rather than 15 or so like before. So I tried to incubate my own hookworms to self infect, but I was unsuccessful.

I went several months, getting worse, trying to incubate weekly. I had an MRI endoscopy and it showed pretty bad inflammation in the sigmoid colon, with a fistula going to the ovary. I've never had a fistula that I've known about in 22 years of Crohn's, so that was pretty disappointing. I finally sourced new hookworms and reinfected in late June with 15, thinking I'd be better in a month again.

But I had a bad reaction to this infection, with fever, diarrhea, and pretty bad pain around week 3 when they get to the instestine. Worried about the fistula, I decided to go on Prednisone to buy me time for the hookworms to do their thing. It helped. The worms matured at week 9 (egg counts went way up), and I started feeling a little better, but I got the flu, and that set me back.

I decided to add TSO to see if that gave me more colonic benefit on top of the Crohn's. Note that I payed $8000 to AIT as one of the early patients, and when we were on good terms, was promised reinfection for more years then the contractual 3, so it seemed fully worth it. Also, the first year, Jasper provided me with all of those trickle doses, so I got way more infections then I payed for, except that they made me much worse. Paying another $5000 for TSO was really hard. I do not work, so this all had to come out of our home equity line of credit, so I'll be paying it back with interest for years.

It's now 3 months since the last infection, I've drank 3 vials of TSO, and I'm not improving this time. Still have a lot of pain in the colon, copious mucus, blood. My BM's are still soft or solid, but in between, I have little mucus/BM squirts, and I've been bleeding since March.

I'm giving it all another month, then I'm not sure what to do. I'm on no other medication, and I've already failed Remicade and Humira. I might try adding in sulfasalazine. It used to help. I developed an allergy to it when on LDN the year before hookworms, but maybe the hookworms would help this not happen?

I've asked multiple times on the board how IBD patients are doing longerm, and I get no answers. I've heard from about 7, and most have to reinfect within a year, if not sooner. There are not that many people who've done this longer than a year. I've been in touch with the researcher in Australia who did the pill endoscopy camera, and he said in their not published Crohn's trial, most lost efficacy and had to be redosed, and for some people, that made their symptoms return to normal, but not others.

I'd like to believe that it's just a matter of keeping a large enough infection in you at all times. However, I have as many eggs as I did last year, when things were working, so why isn't it working now? Is it like most things with Crohn's, that eventually the immune system overrides it, or is it just that I had to wait so long to reinfect, my inflammation got bad enough, that it may take a full 4 months to start working again?

I hope you experience long term relief, but I would ask AIT how many patients they have who truly only need to be infected every few years. I do believe that NA and TT are more effective than TSO, which is ridiculously expensive, considering you have to drink it every 2 weeks. BUt how many Crohn's patients have had long term efficacy? I'd like to think a lot, considering AIT has over 200 patients, and it would be great to hear back from the long term success stories. I do know a person with UC who's been working with TT for over 3 years, and he has complete remission as long as enough worms are in him, and needed to reinfect about 1.5 years into it, which coincides with the lifecycle.

I hope I can write back in a month and say the worms are working again. My plan is to reinfect every 5-6 months with 10 worms,. I'm hoping if I can get the inflammation back under control, this will keep things going and not cause side effects. When I can source human whipworms (TT) I'd like to try them, since good UC reports are coming back with improvement, and considering my Crohn's is the worst in the sigmoid and rectum, this organism seems more likely to help then the hookworms.

I'm still hopeful, but much more reserved about the longterm possibilities. I think the science behind it is overhwelming. But we still need to learn how many worms we need, how often, which species, etc.

By the way, my Vit D level is 54, I take fish oil and magnesium glycinate, soak in magnesium chloride baths (I developed a pretty severe magnesium deficiency since experimenting with hookworms, but the baths are helping), and take 5,000 IU of Vit D along with a multivitamin, resevertrol, and I'm on Celexa and down to 2.5 mg. of prednisone.

We'll see what the next month brings...

You're one of the few patients for whom it wasn't as effective as for others. AIT had over 200 patients and most when they get better, stop posting and get on with their life.

A few questions: why did you do trickle therapy? From what I saw in the research papers, the immune response to the trickle doses is different from the larger ones. The larger doses are much more effective. I got 35 hookworm from the start. Then 4 months later I drank 2500 TT. I am planning to add 35 more hookworm within 6-8 months and will drink 2500 TT every 12-15 months. That way I will make sure I have a stable population.

7007 said...
The problem is; do we know if it works longterm? Helminthictherapy is in the first rush of efficacy, but will it last? I tried hookworms in late 2007. I started with 10 and had bad side effects, (reactive arthritis, edema, fever, diarrhea) but I started having less instestinal pain and gained weight, so I stuck with it. By month 4, blood markers of inflammation had returned to normal, I'd gained 20 pounds, and went from 7-10 painful diarrheas a day to 2-3 soft stools. I have ileal-colonic Crohn's.

But I experimented with "trickle infection" trying to raise my numbers. We did 2 worms weekly, and that made me lose efficacy (probably extended the initial inflammatory reaction hookworms can cause) and possibly influenced my immune system to expel the first worms. I went the rest of the year steadily getting worse, and by December, I had lost my worms completely.

I reinfected last year in February with 10 hookworms again, and this time I had no side effects, and inflammation and pain was gone within a month. I was so pleased that infection levels coincided with efficacy, and I believed that once I had the worms, they should live for a few years, like promised. However, I got a good 5-6 months and symptoms started to come back. I learned how to do McMaster egg counts, and I noticed a decline in egg counts around this time. So I reinfected again last year in September with 10 more, and was better again within about 6 weeks.

Again, I had no inflammation for about 5-6 months, then in March of this year, pain and symptoms started to creep back. I never lost the mucus or urgency, but I was sleeping through the night, had a lot of energy, and was having near normal blood tests, so it was "good enough" for me. People said I looked better then they'd ever seen me, I started being able to bike up hills, exercise, etc., and my skin was a lot clearer, so there were a lot of systemic benefits, even though my colon wasn't completely healed. I could also eat a wider variety of foods, but still was reactive to fiber like lettuce, kale, etc, and got mucus with a lot of fruit, and also diarrhea.

I was going to try TT in march as well as get another dose of hookworms, but I have a blog; waitingforthecure.com and some of the studies I found that showed potential passing on of pathogens invoked a lot of responses, many from AIT's competitor, wormtherapy.com
Jasper became angry at this (and we had a past relationship with a lot of disagreements) and he said he'd never provide TT for me, and would only give me one more dose of hookworms if I lost mine, which I hadn't, they just had decreased in number to a couple of eggs in my test, rather than 15 or so like before. So I tried to incubate my own hookworms to self infect, but I was unsuccessful.

I went several months, getting worse, trying to incubate weekly. I had an MRI endoscopy and it showed pretty bad inflammation in the sigmoid colon, with a fistula going to the ovary. I've never had a fistula that I've known about in 22 years of Crohn's, so that was pretty disappointing. I finally sourced new hookworms and reinfected in late June with 15, thinking I'd be better in a month again.

But I had a bad reaction to this infection, with fever, diarrhea, and pretty bad pain around week 3 when they get to the instestine. Worried about the fistula, I decided to go on Prednisone to buy me time for the hookworms to do their thing. It helped. The worms matured at week 9 (egg counts went way up), and I started feeling a little better, but I got the flu, and that set me back.

I decided to add TSO to see if that gave me more colonic benefit on top of the Crohn's. Note that I payed $8000 to AIT as one of the early patients, and when we were on good terms, was promised reinfection for more years then the contractual 3, so it seemed fully worth it. Also, the first year, Jasper provided me with all of those trickle doses, so I got way more infections then I payed for, except that they made me much worse. Paying another $5000 for TSO was really hard. I do not work, so this all had to come out of our home equity line of credit, so I'll be paying it back with interest for years.

It's now 3 months since the last infection, I've drank 3 vials of TSO, and I'm not improving this time. Still have a lot of pain in the colon, copious mucus, blood. My BM's are still soft or solid, but in between, I have little mucus/BM squirts, and I've been bleeding since March.

I'm giving it all another month, then I'm not sure what to do. I'm on no other medication, and I've already failed Remicade and Humira. I might try adding in sulfasalazine. It used to help. I developed an allergy to it when on LDN the year before hookworms, but maybe the hookworms would help this not happen?

I've asked multiple times on the board how IBD patients are doing longerm, and I get no answers. I've heard from about 7, and most have to reinfect within a year, if not sooner. There are not that many people who've done this longer than a year. I've been in touch with the researcher in Australia who did the pill endoscopy camera, and he said in their not published Crohn's trial, most lost efficacy and had to be redosed, and for some people, that made their symptoms return to normal, but not others.

I'd like to believe that it's just a matter of keeping a large enough infection in you at all times. However, I have as many eggs as I did last year, when things were working, so why isn't it working now? Is it like most things with Crohn's, that eventually the immune system overrides it, or is it just that I had to wait so long to reinfect, my inflammation got bad enough, that it may take a full 4 months to start working again?

I hope you experience long term relief, but I would ask AIT how many patients they have who truly only need to be infected every few years. I do believe that NA and TT are more effective than TSO, which is ridiculously expensive, considering you have to drink it every 2 weeks. BUt how many Crohn's patients have had long term efficacy? I'd like to think a lot, considering AIT has over 200 patients, and it would be great to hear back from the long term success stories. I do know a person with UC who's been working with TT for over 3 years, and he has complete remission as long as enough worms are in him, and needed to reinfect about 1.5 years into it, which coincides with the lifecycle.

I hope I can write back in a month and say the worms are working again. My plan is to reinfect every 5-6 months with 10 worms,. I'm hoping if I can get the inflammation back under control, this will keep things going and not cause side effects. When I can source human whipworms (TT) I'd like to try them, since good UC reports are coming back with improvement, and considering my Crohn's is the worst in the sigmoid and rectum, this organism seems more likely to help then the hookworms.

I'm still hopeful, but much more reserved about the longterm possibilities. I think the science behind it is overhwelming. But we still need to learn how many worms we need, how often, which species, etc.

By the way, my Vit D level is 54, I take fish oil and magnesium glycinate, soak in magnesium chloride baths (I developed a pretty severe magnesium deficiency since experimenting with hookworms, but the baths are helping), and take 5,000 IU of Vit D along with a multivitamin, resevertrol, and I'm on Celexa and down to 2.5 mg. of prednisone.

We'll see what the next month brings...

I was AIT's 3rd Crohn's patient, I think, and their most reactive one. We decided to experiment on me, but it backfired.

How do you know that the patients are in remission and move on? Have you emailed them to find out their longterm efficacy? I've been in private touch with many patients who never post on the board, and one just wrote to me yesterday saying she only had few months efficacy from the hookworms and now is back on Endocort, waiting for another redose.

I agree the larger doses are more effective. However, considering how I just reacted to 15, I'm a little weary. But maybe next time I'll go on Pred and do a larger dose to see if more can take. I assume that would be better, to get more in there.

I'd like to hear from these 200 patients. It was a shock to me to hear that Cal, who has had amazing success with both MS and Sjogernes, has to infect by month 10 or else efficacy starts to decline. In the 3 years he's been on the board, he's never mentioned this.

You're lucky you had no side effects. I'd be doing much higher doses twice a year if I were that way.

Given how easy they are to produce, it's extremely cheap to add them every 12 months, or 6 or 3 if you have to. The most important thing is that it works. Most people don't have any side effects(like me). I think Jasper said under 5% have a reaction more like you but that's controlled by 20mg of prednisone. I received 35 with zero side effects. Why didn't you get 35 or 40 hookworm and 2000 TT with a short prednisone course? It seems like it would've helped you a lot.

The problem is that the people who have autoimmune illnesses are the ones whose immune systems are very good at clearing the infection and getting rid of parasites. That's why those people develop autoimmune diseases in the absence of parasites. So it appears that the time the organisms survive in your body might vary. Some people might have it for 5, some for 3 and some need to redose every 8-10 months. Given how easy it is to take them, I'd say that this is still a very viable treatment. AIT guarantees appropriate infection levels and they are willing to give me as much as I need, even if it's every 8 months. However, if I couldn't obtain them there, I'd have to turn to the DIY method.

7007 said...
I was AIT's 3rd Crohn's patient, I think, and their most reactive one. We decided to experiment on me, but it backfired.

How do you know that the patients are in remission and move on? Have you emailed them to find out their longterm efficacy? I've been in private touch with many patients who never post on the board, and one just wrote to me yesterday saying she only had few months efficacy from the hookworms and now is back on Endocort, waiting for another redose.

I agree the larger doses are more effective. However, considering how I just reacted to 15, I'm a little weary. But maybe next time I'll go on Pred and do a larger dose to see if more can take. I assume that would be better, to get more in there.

I'd like to hear from these 200 patients. It was a shock to me to hear that Cal, who has had amazing success with both MS and Sjogernes, has to infect by month 10 or else efficacy starts to decline. In the 3 years he's been on the board, he's never mentioned this.

You're lucky you had no side effects. I'd be doing much higher doses twice a year if I were that way.

I really appreciate all this information 7007 and HT.

After my resection, if I get sick again like last time (I am praying hard for remission!), I will seriously consider the HT again, as long as I can get all my docs to say it won't interfere with my very mild heart condition. I will not take any chances when it comes to my heart.

HT, I think waiting for a scope is a good idea. It's too early to run out after only three months.

Tsitodawg, this treatment is not illegal, it's just not FDA approved. I understand your skepticism, I feel the same. But if there's good hard evidence that a treatment has potential or is working for many ppl, I'm willing to listen. Otherwise, forget it!

I'm not afraid to discuss any treatment, natural or medical. I will even consider it for myself if there is concrete scientific research to back it up.

BTW, I also appreciate the tone of this thread, whether ppl agree or not with this treatment.

I've been reading the old posts on helminthic therapy and found an interesting one. Take a look:

http://health.groups.yahoo.com/group/helminthictherapy/message/547

read from the bottom and read the rest of the thread.

I think that based on the research by David Pritchard, Joel Weinstock and others this is potentially a very effective therapy. If you stop reading my posts and instead head to the google docs link on my wiki page, carefully read each of the 120 research papers there while looking up all the immunology terms that you're not familiar with in an encyclopedia or a biology reference book, you will then start to see where I am coming from. Alternatively, you can just use only FDA approved drugs such as prednisone, humira, remicade, etc - those are <sarcasm on> highly effective in achieving remission, lack side effects and are extremely safe, of course <sarcasm off>.

You keep saying that you want me to wait a year and do an endoscopy. I probably will do it at some point but I repeat - I am just one patient. It's not very smart going just by my experience alone - whether good or bad. Go and get more info from the other patients. Some of them started this therapy years ago and are still in remission. There are more than a few of them. Seek them out. Talk to them. Read the research papers. Read one every 2-3 days since they are pretty dense. Then make up your own mind.

tsitodawg said...
How can you tell Roni that it can potentially make his remission permanent? I really do think it is great that you have had good results but 2-3 months is not enough time to claim complete remission. Many of us have gone through periods in which the disease virtually disappeared and then came back without any warning. I had a nearly 3 year time period that all was thought to be good and that I had no disease and was not on any medication. Then it came back and 2 surgeries later I was out of remission. Being sceptical is not being against thinking outside the box. It is being smart and seeing that someone is marketing a product that is not approved and selling it as a golden pill. $4,000 for a product that is not approved is insane and could even be dangerous. To read one post that even told one person that they could make their own is even more risky and another redflag is raised. I would love to have you go into complete remission and hear back from you in a year. Along with a testimonial of the product, it would be great to have a scope with biopsies to back up the maker's claim. Then you should be paid by them for marketing their product so well.