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

Stef, most of your questions are answered on my Wiki site:

Http://opensourcehelminththerapy.org

So, first of all - it's not contraindicated as we always had these organisms and getting rid of them is what's causing our issues. There's really nothing gross or disgusting about it. I went through a lot worse just by having Crohn's. Keep in mind that you have billions of bacteria in your gut and you need them to survive. Think of them as probiotics - that's what they really are in small numbers, not parasites.

Would it be possible to only take TT? Sure. I just decided to do the combination therapy because I *really* wanted to be sure. It's up to you whether you want to only try one organism or both. This way if it still didn't work for me, I'd know that I did everything I could. And if it did, two is better than one since they live in different places of the bowel.

You will not see any organisms in the toilet. They are really tiny and you wouldn't see them. They also don't get excreted until they reach the end of their life. Only their eggs are excreted on a regular basis and those are microscopic (you need a microscope to see them).

Is it possible to give it to others? Please read the lifecycle that was described in my first post above. It describes quite clearly that they need to be incubated in soil for 2-3 weeks at a very specific humidity and temperature. So unless you do that, no it's not possible to give it to others.

I stopped Humira after 4 months on it. I wouldn't stop taking any meds until at least 16 weeks into it. I would recommend slow weaning, paying close attention to symptoms. You know your body best and you will know if you're improving.

I addressed a stricture concern in one of my posts above as well.

Stef17 said...
I'm fascinated by all of this. I would TOTALLY pay a couple of thousand dollars to take something that would put me into remission. I'm just super heebed-out at the idea of taking in a parasite. It seems so contraindicated since what we suffer from is a bowel disease, ya know?

I have CD in the colon. It's pretty severe. Would it be possible to only take the TT and not do combo therapy? Also - do you ever pass any worms/parasites? Not to sound ignorant or disgusting, but I'm very uneducated on this - if I took this therapy am I ever going to see a parasite in the toilet??? Also have mild stricture in the rectum, would this pose a problem? Also - were you on meds when you started therapy? If so, how did you stop taking them? Did you wean, did you stop cold turkey? Also - is it ever possible for the people you live with to catch the parasite from you (the infected person)?

Post Edited (Helminthic Therapy) : 9/29/2010 8:29:45 AM (GMT-6)

Ok so I'm going to get picky here, but you are skipping over some of the most important questions people are asking? How long has your remission been? Has it been verified by any visual exams or just by blood work and the way you feel. Many of us here have had VERY long "remissions" where we felt great, only to find out later and very painfully that our disease was not in remission. Personally I spent 10 years living a wonderful life, medication free, eating everything and basically symptom free, only to be hit full force almost overnight with fissures, fistulas and strictures. It took another 10 years to undue the damage.

I don't doubt that the lack of parasites in our body plays some part in this disease process. However, before I spend thousands of dollars and go against doctors orders and common medical practices in this country, I need more than anecdotal evidence that this treatment works. And right now you are skirting some of the main questions and touting the conspiracy aspect and delving deep into life cycles of the worms and science of it all, this all just sends bells and whistle off in my head.

OK, I am just one patient - going just by my experience isn't very scientific regardless of how long my remission is. I am not the only one who tried this treatment. My remission has been short(since July) and I haven't had an endoscopy since then but why would I bother? I know I am feeling good, I know my CRP is down from 200 to 0 and my ESR is at 0 as well.  I know that my food allergies are gone because I can and do eat these foods now. Why should I subject myself to an endoscopy? So that you would feel better about this treatment? I am doing you a favor by posting about this treatment and spending my time answering questions while I could just use this time to get on with my life and forget about my fellow Crohnies.

In my case, the remission hasn't been long yet but I am drug free now. I would normally get sick 2 weeks after a missed Humira dose. I might have missed this question before, let's not accuse me of anything. List your questions that you think I skipped over in bullet format and I'll do my best to answer them.

Now about statistics. Go on my wiki site and lookup Joel Weinstock's statistics with TSO. He got 65%+ remission rate. Go on the yahoo board listed on my wiki site, over 250 patients who were treated participate on the forum. Read the previous posts and see how many people claim it didn't work for them. There are over 5500 posts on the site and over 640 members. My wiki site has links to various blogs. Go read them and see how many people are now in remission. My wiki site has links to research articles. Some of them document medical trials that already took place. Go read them and after you finish reading them, then come back and talk about conspiracy theories.

I don't think helminthic therapy is going against doctors orders and common medical practices. My GI is on board with this and he is a director of New York Hospital Gastroenterology. My family PCP is also on board with this.

I understand that you're skeptical. I was too before I tried it but please do your research first.

You don't have to do anything, of course. You can ignore this and continue merrily on your way.

Zanne said...
Ok so I'm going to get picky here, but you are skipping over some of the most important questions people are asking? How long has your remission been? Has it been verified by any visual exams or just by blood work and the way you feel. Many of us here have had VERY long "remissions" where we felt great, only to find out later and very painfully that our disease was not in remission. Personally I spent 10 years living a wonderful life, medication free, eating everything and basically symptom free, only to be hit full force almost overnight with fissures, fistulas and strictures. It took another 10 years to undue the damage.

I don't doubt that the lack of parasites in our body plays some part in this disease process. However, before I spend thousands of dollars and go against doctors orders and common medical practices in this country, I need more than anecdotal evidence that this treatment works. And right now you are skirting some of the main questions and touting the conspiracy aspect and delving deep into life cycles of the worms and science of it all, this all just sends bells and whistle off in my head.

I will read up on this, but there's a lot of catching up to do and I only have a short attention span.

I still have my reservations that this is simply another 'miracle' treatment, which, if it was more widely adopted, would turn out to not be that way. I'm thinking of Remicade. I know it works very well for some, but it's not really the amazing, last resort treatment for Crohn's that it was once touted to be.

I do have one question actually. Do you feel truly well, eg as you did pre-Crohn's? Can you eat normally and without pain or discomfort? I'm so sick and tired of medications which either make me feel worse or have no noticeable effect whatsoever. I couldn't care less if I had 10 years of remission and then got struck down overnight by obstructions, fistulas, etc. - I would practically sell my soul to the devil for 10 years of remission and a return to full health at this stage.

If your health is on the line and you really want to get well, you will spend the time to at least research everything I said. Read the blogs that I have links to on my wiki page, join the yahoo board, read the old posts and send in questions - you will get a ton of responses. Don't bury your head in the sand.

I tried Remicade and Humira. Humira is better as it's a human antibody as opposed to Remicade's mouse antibody. And you can administer the shot yourself with a pen injector instead of going to the dr's office for an IV. Are you aware of the "black box warning" on both? Each time I had either I would wonder - is this the one that will give me lymphoma? Helminthic therapy doesn't have side effects like TB and cancer.

I can eat everything now - it's truly amazing: fried foods, sweets, nuts, seeds, milk, cheeses, burgers with bacon, etc - everything that was off limits before. I am in 7th heaven now from all the abundance of food I can eat. I also lost my food allergies to avocado, cherries, peaches, nectarines, plums and almonds. My gums, tongue and lips would get itchy and swell up on contact before July of this year. Now I can eat a whole raw avocado and be just fine. I am still amazed at it and find it hard to believe.

I am on no medications - I feel 100% like a normal human being like before I had Crohn's. I no longer need to know the location of every public bathroom in my city. I no longer need to come up with excuses to my friends why I can't go out.

NiceCupOfTea said...
I will read up on this, but there's a lot of catching up to do and I only have a short attention span.

I still have my reservations that this is simply another 'miracle' treatment, which, if it was more widely adopted, would turn out to not be that way. I'm thinking of Remicade. I know it works very well for some, but it's not really the amazing, last resort treatment for Crohn's that it was once touted to be.

I do have one question actually. Do you feel truly well, eg as you did pre-Crohn's? Can you eat normally and without pain or discomfort? I'm so sick and tired of medications which either make me feel worse or have no noticeable effect whatsoever. I couldn't care less if I had 10 years of remission and then got struck down overnight by obstructions, fistulas, etc. - I would practically sell my soul to the devil for 10 years of remission and a return to full health at this stage.

Post Edited (Helminthic Therapy) : 9/28/2010 5:23:07 PM (GMT-6)

HT, did you see my Q on the yahoo group about the therapy and heart disease? I was hoping someone else might know the answer but no one responded yet. Any advice?

I appreciate your obvious knowledge of Helminth Therapy, and there is no doubt everyone reading this is dreaming that it will work for them as well as it did for you, however there are a few concerns which I'm sure you can understand, why someone might question your intent. 100% of your posts on this forum tout the miraculous benefit of Helminth Therapy, you mention support the seller's notion that they do not make money on the service, which I disagree with completely. As you say yourself, it is not difficult to produce, and I think the unlicensed providers are making very good money doing this. They know that there are just the right number of people with that kind of money to keep them busy enough and maximize profit. There also has to be someone to market it, and being that it isn't approved in the U.S., the internet is a great forum to gain free advertising. You mention that you met one of the doctors involved in offering the product, perhaps there is a financial benefit for you to refer Clients. I respect your wish to share your positive experiences, most people here would do that with any drug, but to create your own website dedicated to it? The bottom line is that there is profit in selling Helminths, and very few if any documented case studies that involve a significant number of participants. I don't think Helminth Therapy is dangerous, but I don't know that I would willing send someone $3900 without being able to verify the quantity and quality of what I'm receiving, the safety of it - what kind of insurance does that provider have if I become seriously ill? I truly hope this is the miracle cure for everyone that is was for you, but believing solely in internet posts is difficult. I do hope to come back here one day and applaud you for sharing your information but for now I remain reserved.

I understand your concerns completely. I was exactly in your situation 3 years ago, very skeptical of any "miracle" cures. And it was quite a lot of money. So it took me 3 years of reading various research, participating on the yahoo board, talking to people on the forum who took it and follow up with them to make sure it wasn't a scam. Hopefully I can shorten that amount of time for you. If you want to talk on the phone, I am available to answer any questions by phone or video skype (if internet posts are not enough).

Addressing some things you mentioned:

I am not hosting the wiki site. If you read the "about" section, you'll see that it was started by Paul, a Crohn's patient a few months ago. I do actively add to the site as I liked the design and I want to spread information about helminthic therapy. It just seemed very useful, so I took advantage of it.

I did meet with Joel Weinstock at a presentation in the UN a few days ago but I don't advocate taking his product, it was too expensive and didn't work nearly as well as NA and TT. Weinstock isn't interested in NA and TT either, it's his main competitor as a matter of fact. Weinstock's company Ovamed makes TSO (Trichuris suis ova) which got GMP approval recently and is now undergoing clinical trials. TSO needs to be taken every 2 weeks, NA and TT live for years. I have no connection to Weinstock or Ovamed.

The seller that I got NA and TT from is definitely making money on the therapy and I never claimed otherwise. Why is he charging so much? Because he is the only reliable provider of it and demand for his product is very inelastic (for those familiar with basic economics of supply and demand). Essentially he charges so much because he can. FDA ran him out of the country, he had to leave everything and run. He doesn't have a job and this is his source of income. I am not going to say it's bad or good that he charges so much - it's his call. I personally would charge less but I am not selling it as I don't want to end up the same way.
How do you know he is reliable? You don't. You can find out more by talking to his patients (like me and other people on the yahoo forum). Is there insurance? No. This is an experimental therapy with absolutely no warranties of any kind that you do at your own risk. You get sick - it's your problem. However, if you read up on it, you'll know that it's very well studied and there is virtually no risk, especially keeping in mind that you can always get rid of them with albendazole.
about documented studies with helminths - there were at least 4 or 5 already and the papers are on the wiki site.

You will have to make up your mind. I understand that it's scary and it feels like a risk and no one wants to be the idiot who loses 4 grand for some snake oil cure but because this therapy is essentially illegal in the US currently, that's the way things are now.

If you read the wiki, you will see that there is a DIY section and you might want to try your luck there - it should be significantly cheaper but obviously homegrown solution would be more risky than going with a reliable provider who did it for a few years now. The choice is yours.

Gumart1 said...
I appreciate your obvious knowledge of Helminth Therapy, and there is no doubt everyone reading this is dreaming that it will work for them as well as it did for you, however there are a few concerns which I'm sure you can understand, why someone might question your intent. 100% of your posts on this forum tout the miraculous benefit of Helminth Therapy, you mention support the seller's notion that they do not make money on the service, which I disagree with completely. As you say yourself, it is not difficult to produce, and I think the unlicensed providers are making very good money doing this. They know that there are just the right number of people with that kind of money to keep them busy enough and maximize profit. There also has to be someone to market it, and being that it isn't approved in the U.S., the internet is a great forum to gain free advertising. You mention that you met one of the doctors involved in offering the product, perhaps there is a financial benefit for you to refer Clients. I respect your wish to share your positive experiences, most people here would do that with any drug, but to create your own website dedicated to it? The bottom line is that there is profit in selling Helminths, and very few if any documented case studies that involve a significant number of participants. I don't think Helminth Therapy is dangerous, but I don't know that I would willing send someone $3900 without being able to verify the quantity and quality of what I'm receiving, the safety of it - what kind of insurance does that provider have if I become seriously ill? I truly hope this is the miracle cure for everyone that is was for you, but believing solely in internet posts is difficult. I do hope to come back here one day and applaud you for sharing your information but for now I remain reserved.

Post Edited (Helminthic Therapy) : 9/28/2010 7:51:24 PM (GMT-6)

Yes, and I did post an explanation of why no one is investing into clinical trials for NA and TT. Read my post about it above. This therapy will most likely not be approved for many years - Weinstock told me so himself and he is dealing with FDA all the time to apprive his TSO product (the one that needs to be taken every 2 weeks and that is made using pathogen-free pigs). However, the basic science of helminthic therapy is sound. TSO trials showed a lot of promise. Helminths clearly modulate the immune system and suppress inflammation in mouse models.
The jury will be out for many more years - you can choose to remain sick waiting or to follow my example and the example of 200-250 people who already tried it.

I disagree with your risk assessment though. NA and TT are extremely well studied organisms and the risks of light infections are virtually nil. They are asymptomatic and CDC doesn't recommend treating light infections.

Can you please describe what you had in mind by risks of helminthic therapy with references if possible?

~~~~
Here's why it won't be approved, pasted from the previous post:
You can't patent a biological organism and it's extremely easy and simple to produce, so if it ever got approved by FDA, anyone would be able to mass produce for a very small amount of money. However, it takes about $100 million dollars and 8-12 years for a drug to make it through all the medical trials and get approved. No pharmaceutical company would do that if they can't recoup their costs. Additionally, all the medications that people with auto-immune diseases( such as asthma, allergies, type-1 diabetes, CD, UC, Celiac disease, multiple sclerosis, Sjogren's syndrome) take cost a lot and insurance companies cover it. Humira alone is $1800 per dose. Imagine if something comes to market, something that you can't patent and you take every 3-5 years and it eliminates all symptoms. Big pharmaceutical companies would lose billions of dollars, whole factories would close - it would be terrible for them. They will do all in their power to make sure this never sees the light of day.

njmom said...
Helminthic, thanks for posting the studies on the wiki site. Just one quibble - there have been very few clinical trials of helminth therapy to treat humans for Crohn's, so the jury is still out.


This is still just a theory. Perhaps the best documented trial was the pig whipworm study done about a decade ago (results published in 2003), but Ovamed seems to be stuck...not much progress has been made.



So there's a lot of "stuff" indeed under studies on the Google docs pages, but the most important studies - compelling evidence via Phase I and II clinical trials for helminth therapy in Crohn's patients - are sorely lacking. Not because you weren't thorough, but because the trials haven't been done, yet.



Helminth therapy in Crohn's, like any therapy, poses risks, and a speaker talked about just one of these risks at last year's annual Advances in IBD conference in the States. We don't know, for sure, what all the risks are, because the field is still under study.

I love the discussion on this thread. I love how everyone is bringing their questions forward with respect and I appreciate HT's respectful responses.

I've done research on PubMed and found it very helpful; I'm an engineer and enjoy reading technical articles, but I'm too swamped at the moment to dive into HT's. I will get to it, tho!

In my previous experience reading medical research articles and learning about a very narrow topic (not related to CD) I found I was able to talk to the principal investigators of several different studies without much difficulty. I even elected treatment at one medical center and was pleased with the result (my first daughter!). However, now that treatment is illegal, the research is considered freaky and I occasionally panic that we made these choices to achieve parenthood. I feel a little more wise for the experience and will probably spend 3 years thinking about helminths, like HT did.

I told my DH about this idea last night and he was concerned about anemia (already have low hemoglobin) and strictures (probably have a nice one in the small bowel). These are conversations I'll be having with my medical team once I switch docs. New GP coming in 2 weeks, new GI to follow after that.

Thanks for the great thread, keep it up!

seconder, do you know your vitamin D blood levels? If you're under 50ng/ml - you would greatly benefit from supplements and you should feel much better if you raise it to 50ng/ml. Do you take omega-3 fish oil and if yes, what kind and how much EPA and DHA does it contain?
Have you considered adding hookworm to your TT? Where did you get TT? From Jasper? Do you know your B12 levels? Are they above 600pg/ml ? If not, you should work on raising that as well as it should help with your fatigue. Do you take chelated magnesium supplements? You could be low on magnesium which would give you the symptoms you're having. Have you tried a gluten-free diet? It really helps some people. Have you tried Boswellia? It has very good anti-inflammatory effects for the joints.

seconder said...
I don't know if it's been mentioned yet, but the FDA reclassified helminths as medical devices, in part, because they have been proven effectice (and for political reasons as well).


Once upon a time, Joel Weinstock was my current GI's medical fellow. My GI approves of the therapy, though he observes that it is hit or miss. When it's effective, it's very effective. However, it's difficult to predict for which patients it will be effective. If it doesn't work, though, he finds it's relatively harmless/ benign.



I took TT for UC about a year and a half ago. It's been very effective in some ways. I went from ~12-15 bloody stools a day to one or two a day. I see just a touch of blood maybe once a month. Urgency, abdominal pain, gas, mucus, etc have all decreased to occasional appearances. Blood panels have all improved. It hasn't been 100% effective, but it's made the disease very manageable.



It hasn't done anything for joint pain (which has gotten worse) or fatigue (holding steady). I've been taking sulfasalazine for the joint pain, but it isn't nearly as effective as it was in the past. . . .

tsitodawg, did you read all my posts on the last 2 pages? I am off all my meds and my CRP dropped to zero, I gained weight, 8 pounds so far, my hemoglobin is back to normal. I will probably get a scope in 6-12 months just to have my GI believe me but I don't feel the need to run and do it now.
I also explained why it's not approved by FDA and will probably never be approved. Using the therapy itself is not illegal, it's illegal to sell the organisms with the claim that they treat or cure any disease unless that claim has been verified by the FDA.
At this point you have to decide, do you want to try the therapy that has a high chance of success and very low risk other than financial? Also, don't base it just on my experience - I am just one patient. Go to the yahoo forum and talk to the other 250.

tsitodawg said...
I would be more likely to jump on board if your remission was longer than since July. Prednisone, remicade, humira, cimzia, and even asacol can produce a remission of 2-3 months. I still don't understand why you would not go in for an endoscopy or colonoscopy to verify that you are not having active disease. What better way of proving remission than to have a clean scope. The other thing that is worrisome to me is that this is not a legal therapy and is still being discussed on the board. There are other therapies that I don't advocate that are not allowed on here due to the fact that they are illegal and forum rules prevent them. I admit I am sceptical but that is because there are multiple red flags being raised. The fact that it is not FDA approved is one thing, but the fact that you admit it is not legal is another.

seconder, if TT helped you, are you considering adding NA?