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fredblue1951

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Hi everybody,
I just wanted to give hope to the people who have been trying many different medication against the crohns disease amd nothing really helped. I have had it as well but since I took TSO (eggs of the whipworm) my condition has improved (more or less dissapeared) a lot. I bought it from the company called Biomonde from Thailand after I have done a lot of research on it through articles. Its not really cheap but worth it. I took one cycle which inlcudes 10 doses and i feel so much better and my symptoms a nearly gone. My doctor was really surprised about the effect as well. Anyways in case someone is interested just check their webpage or ask me. I m glad to answer any question. I hope that this post is helpful for some of you.
Many greetings, Fred
 
I am glad it is working for you. I would have to be in real bad shape before I could get past the idea of using a parasite as a treatment. But if that is what it takes to get relief, I can understand why you are using it.

Keep us posted on the long term results. It is certainly a very unique method.

D Bergy
 
I haven't chimed in on this treatment, but didn't we used to take medicine to get rid of worms when we got them because they were generally bad to have in our digestive system? I think I'm with D Bergy on this one. I'd have to be really bad off to intentionally give myself worms to deal with my Crohn's. Somehow, it just doesn't seem like a healthy thing to do. Not that some of the meds out there are any healthier, but adding parasites to our digestive systems just seems bad somehow.
 
Fred

Do those whipworms die off after a period of time? I am assuming that is why you have to keep taking them.

I would hope that you can get rid of them if you choose, without a problem.

Best Regards
D Bergy
 
Pardon me sounding judgemental and cynical, but is this a personal story, or are you a representative of biomonde? I somehow get the ipmression that you're a sales rep for this product. If I'm mistaken, then I apologize.
 
usually they send you the medicine to get rid of the worms if you decide you dont want them anymore. whipworms are fairly easy to eliminate and really don't do much other than sit there in your digestive tract.
 
Worms

I would like more info on this... I have read many articled on eating live dew worms... as you digest them they give off a chemical that helps our immune response. People in 3rd world countries rarely have Crohn's. There has been an increase in ISD in the US since the 1950's. Since that time, what has changed? Gee... maybe our fear of getting sick?! We now have antibacterial everything! We limit ourselves and our kids from every bad thing there is! I believe we are making the bad stronger by making our immune system weaker....
So why is it that white collar workers have a higher incidence to Crohn's? Why don't you see it in 3rd world countries? There are many theories as why that is... so many... it's worth a thought... you see, I am allergic to Remicade... I loose my vision with steriods... and the manufactor of Hemicade said I shouldn't have it due to my other reactions. All the other drugs haven't helped and in two decades I've tried more than my share... So fredblue1951, I would like to know why you tried this. And how you heard about it.

I have read about this for several years, since the late 90's, but never heard of anyone trying it. To my understanding, it is the eggs that are ingested and they hatch. These worms typically live in pigs. They only live a few weeks. The theory is they attach to the inflammed bowel and triggers a response in our immune systems... a response we don't normally have. Like Remicaide... nothing is a permanent fix.

Most people wouldn't eat moldy bread either... but that what good it's given us. I guess I won't rule anything out...

And I didn't like the idea of Remicade at first either... I mean it's made of murine which is mice.... but I tried it and it was a miracle... a short lived miracle... since I had a severe allergice reaction to it... but it was great while it lasted!

A little worm in the tequilla? yep, that's gross... but people drink it for no reason at all.... maybe this is the Remicade and Hemicade of tomorrow? A worm with a purpose!
 
@Kev:
I think this is quite insulting. I just wanted to make this post because some others are maybe interested in what I experienced because many people dont even know about it. Please save your inapropriate comments for someone else.

@D Bergy and DansJV

Well actually you guys are right. I really had to fight with myself to take these worms. I actually checked where these worms come from and also asked the people at Biomonde because I always thought that parasites are bad. What I found out was, that this whipworm was in the water centuries ago in the industrial countries. Since they filtered the water or whatever they do with it, the worm wasnt in there anymore. I think, but I m not sure, thats how Biomonde concluded that it has something to do with this worm, because crohns disease exists only in highly industrialized countries.
To your other question, these worms dont stay in your body, somehow they are supposed to provoke a reaction of your immune system to rebalance it. I asked my doctor and he said in case there is something bad happening I could take antihelmitic medecine to get rid of the worm before it is out of my system through a natural way.

@HDgirl

I heard about this worm through a friend who also tried this. There were also some publications about it, which I read. I also contacted Dr. Weinstock, who is involved in this from the University of Iowa.
I see you have read a lot about the stuff as well and i couldnt explain it better. I tried it because I really believed that it would help. My friend had also a good experience with it, so it was easier for me to believe in it.


Greetings,
Fred
 
Hi Fred,

Interesting thoughts and experience you have had... I must have missed your post on the introductions threads sorry.

Could you tell me how long you have had Crohn's for and how it affected you?? My reason for asking is with the treatment you have taken I am trying to work out where in the chain of action on inflammation etc it would come. Also what action does it have i.e does it reduce inflammation or heal ulceration? Does that make sense?

For instance, folk will take 5 ASA drugs like Pentasa for mild to moderate Crohns, Imuran or Remicade for moderate to severe Crohn's and all these meds work from different angles. Where would this therapy come in?

I think you will also find Kev was not intending to insult you because he asked a simple question based on how you phrased your post and he also apologised in advance. So your comments to him were a bit heavy and unfair. To be honest I can see why he asked the question as you advertise a specific company and your post was fairly generalised too about how wonderful and how well you are now etc.

I have however read some things about therapy like this but am unsure as to the benefits proven in research perhaps you could enlighten me?

Looking forward to hearing from you Fred.
 
Actually, fred, I find your response to my question far more inappropriate than my question. In fact, let me re-state my question, this time without apology, and see if this time you'll answer the question rather than attacking the one who asked it. Are you employed, directly or indirectly, with the company that is offering this treatment? I raise this question because your post uses the phrase 'hope'... and not all of the members of this site are adults, versed in the ways a lot of marketing companies, and their reps, bandy about terms like it w/o a shred of proof. Personally, there is just something about your posts, and the phrases you use(d), that just don't seem to convince me to try this!
 
Why is there so much ignorance about the use of helminths to cure Crohn's? The research is clear, a 76% remission rate for patients non-refractive to traditional therapies. But still we get ignorance and the ick factor here. Who cares if he is paid by Biomonde or Ovamed. Does it work should be the question. The answer is yes it does, and that it is more effective than any other therapy out there. Google "helminthic therapy" or "Crohn's hookworm" or "Crohn's whip worm" Read some independent research put out by a university instead of recycled drug company press releases and do yourself a favor.
 
I do not know how this line of discussion helps anyone.

It certainly makes a difference if someone affiliated with a company offers a testimonial vs an uninterested party. It was a simple question that only needs a simple answer.

It would be nice to know more about the therapy but this sure is a strange way to promote it. There are about a hundred other novel treatments out there and I am sure I am not familiar with all of them. Nor is anyone else. So if I am ignorant about this treatment I am surely ignorant about fifty others as well. That is one of the purposes I am here for is to find out things I do not know. If any of us had all of the answers there would be no need to be here at all. We would be cured.

I don't think we need any more hot headed responses. It does not further the cause. Just the facts please. No need to insult or be insulted. We all have a common enemy without need for any more.

Best Regards

D Bergy
 
Hi FQ1513,

Feel better after your rant? ;-)

Yes there is research out there on helminth therapy just as there is everything else. The original poster has made some claims and I have asked for extra info in relation as to how it personally helped them because they are such an advocate and also claim such wonderful personal progress.

Anything that can be of benefit is worth looking into. HOWEVER, just because it works for one person or 76% doesn't mean it will work for everyone does it? Hammering folk into the deck with your rant doesnt leave room for discussion and every "story" has two sides as you are very well aware.

None of us here wants to be blinded by science perhaps but we are all here to support and learn from each other. Please allow us to do that.

I also wonder if you and the original poster are connected with such similar usernames. Perhaps you could clarify that for me? I think I must have missed you too on the intro page so tell us about yourself and how helminth therapy has helped you.

Looking forward to hearing more from you.
 
One of the things this disease has taught me, ... is that when something doesn't smell right, there is usually something bad going on. I won't say anymore on it.
 
@Kev
Well if you think that my comment was inappropiate I apologize, I get very fast emotional. Maybe I was being too general at the beginning, but I didnt know if anyone is interested at all in this and what I should state here. Besides that I m really not trying to convince you to try this product, I only wanted to state that it helped me. To answer your question: I have really nothing to do with this company. I hope that we can leave this discussion from now on and just concentrate on the real problem like the others mention in this forum.

@ soupdragon

I have had crohn`s since 6 years. On good days I was almost without symptoms and had only a few cramps, the problem was that I have a job in an office and on the bad days I had strong diarrhea with blood and needed to run to the bathroom around 20 times during the day. When I started to take it, on the day I took it, I had strong diarrhea but the days afterwards were really good almost no cramps or anything. And now I have almost no problems...sometimes some slight diarrhea but nothing problematic. So I dont need to worry at work anymore about not getting my job done or people looking at me strange. Its such a relief, I dont know if everybody knows here what I am talking about, but I hope you do.
Regarding your question where this would come in, there exist different doses that you can take. Since my symptoms were moderate they told me to buy the bottles with 2500 eggs. These ones are for severe and moderate crohns disease. There exist also other for mild crohn and for people who dont have crohn since a long time, but I dont know which dose they need. I think you would need to ask them about it.
To your last question I can tell you that I asked them to send me a information package with research papers. They have done research with patients who tried the TSO with 2500 eggs and documented that. After the treatment at different patients, they could prove a large improvement concerning crohns disease and colitis as well.

I dont if FQ1513 has tried this treatment as well, I dont know who he is, but I would also like to know if the therapy helped him as well?
 
There is some, preliminary but promising data on the use of T suis to treat CD
http://gut.bmj.com/cgi/content/abstract/54/1/87
Trichuris suis therapy in Crohn’s disease
Background: Crohn’s disease is common in highly industrialised Western countries where helminths are rare and uncommon in less developed areas of the world where most people carry worms. Helminths diminish immune responsiveness in naturally colonised humans and reduce inflammation in experimental colitis. Thus exposure to helminths may help prevent or even ameliorate Crohn’s disease.

Aims: The aim of the study was to determine the safety and possible efficacy of the intestinal helminth Trichuris suis in the treatment of patients with active Crohn’s disease.

Patients: Twenty nine patients with active Crohn’s disease, defined by a Crohn’s disease activity index (CDAI) 220 were enrolled in this open label study.

Methods: All patients ingested 2500 live T suis ova every three weeks for 24 weeks, and disease activity was monitored by CDAI. Remission was defined as a decrease in CDAI to less than 150 while a response was defined as a decrease in CDAI of greater than 100.

Results: At week 24, 23 patients (79.3%) responded (decrease in CDAI >100 points or CDAI <150) and 21/29 (72.4%) remitted (CDAI <150). Mean CDAI of responders decreased 177.1 points below baseline. Analysis at week 12 yielded similar results. There were no adverse events.

Conclusions: This new therapy may offer a unique, safe, and efficacious alternative for Crohn’s disease management. These findings also support the premise that natural exposure to helminths such as T suis affords protection from immunological diseases like Crohn’s disease.
---------------------------
However, there are also dangers.
It is often said that these things do not grow to maturity in humans and can't colonize humans. Thay may not be the case. Recent evidence seem to suggest that they can and do.
http://findarticles.com/p/articles/mi_qa3725/is_200605/ai_n17180945/pg_1
There are potential dangers here especially the very real possibility that larvae may wind up in the retina or CNS.
http://www.ibdforum.com/news/index.asp?docid=N755
There is real potential here but a lot of work to be done assesing effectiveness and potential dangers of this treatment. It isn't ready for prime time yet.
---
Responding on this forum is a tiring business. All this looking for study results and reading pathology reports...
 
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I do remember that roundworms which are a natural parasite in dogs can spread to humans even though they are not an ideal host. They have been reported to leave larva in various part of the human body in rare cases. Sometimes causing blindness. Completely different parasite but it does illustrate what can occur with certain parasites. If we do have leaky guts, as I suspect I wonder how that affects the treatment.

It is an interesting treatment for Crohn's, but I do not think all of the possible long term side effects have been uncovered yet. I hope it is investigated further. It may turn out to be a very good option for some.

I hope you have continued success Fred. I think many of us would be interested in your progress using this new treatment. Please watch for any adverse reactions.

Best Regards

D Bergy
 
Hi Fred,

Thanks for coming back to me I appreciate it. Very interesting the results you have had and yes many of us here will understand your problems with running to the loo many multiple times a day! I have just returned to work after 4mths off sick due to my crohn's and whilst off my boss moved my desk to another office as there were no loo facilities at my original office. Believe me it aint funny sprinting across a carpark up to 14 times a day!

Its very good that you have had such positive results. How long did it take overall for you to feel more stable? Its interesting that things changed so quickly since initial intake as well. Did you have any side effects that you noticed at all?

Sorry for the questions I am intrigued...


Old hat,

Good article, interesting to see both sides to it. Not surprised you are a tad tired with all the homework you have had of late!
 
So the whipworm studies indicate that it alleviates the symptoms in a majority of persons... numbers seem higher than methotrexate.. but isn't without risks.
And how it works exactly is unknown, but seems to suppress the immune system
in humans (of course, for an organism to survive, it must have some provisions for fooling the host's own response). and as for it's safety, isn't it a wee bit too early to tell? first, there are contradictory reports... and since the studies are recent, and these were trials, then it doesn't have the history of so called 'traditional' methods like azathioprine or methotrexate, etc., etc..

I'm happy that those who have tried it have found success. I wish them well.
My personal take? If I run out of traditional options, and were offered this as a last resort, then (with nothing to lose) I'd go for it. However, if I had lots of other options open to me, I wouldn't jump at experimental treatment where the methodology and long term risks were still relatively unknown/untested..
Especially where this seems to be (at initial face value) another treatment of the symptoms of the immuno response(s), and not a 'cure' for crohns/colitis. And, for example, I've had good results from taking 'salofalk'.. but I would NOT recommend to someone.. say taking Pentasa, that they should switch over to salofalk BECAUSE I had great results with it. Why? Because I'm not qualified to make such a recommendation on the basis of nothing more than my unique personal experience with the disease. but that's just my humble opinion, ok?

I also feel that breakthrough or cutting edge treatments that provide results like this one won't be long making the transition to common practice.. except if there may be concerns over the source and the quality controls in place to ensure these treatments continue to provide safe therapy to their patients..
 
Was going to post here, but I think I'll just blog it. Didn't want to possibly continue the argument. Especially when much of what I might've posted is only theory, like people living in the country and near farm animals not getting Crohn's. :-\
 
Good point Dan. Maybe what they should be looking for is a bacteria or parasite that normal people have as opposed to one we may have. Never thought of that before. Thanks for the out of the box thinking.

D Bergy
 
My dad started off as a farmer, as did his dad before him, and so on and so on. He ended up making his living as a carpentar, but we usually lived on farms, or at least hobby farms. Had livestock, grew our own crops, even were members of 4 H. My uncle had a dairy, and being around animals, livestock, you name it was pretty much my routine till I was grown. Next door on one side lived dairy farmer slash mechanic (farm in the back, garage and convenience store at the road).. Other neighbor was our local vet. so I have been around animals, their offspring, their outpourings, whatever most of my life. Can't think of anything I wasn't exposed to (following my Dads farm philosophy that you're going to eat a peck of dirt before you die) that a city boy wouldn't go into hysterics over... We slaughtered our animals, hung them to age, made our own sausage, head cheese, well, you get the picture.
Ate fresh veggies right out of our own field. Even made our own wine from our cherry orchard.. 2nd neighbour over was a chicken rancher, and if you've never been exposed to chicken manure being spread on a field on a hot month
then you haven't experienced the most potent & disgusting smell in the world.
I've used more than my share of privies (outhouses), been around carcasses of long dead animals.. (spring thaws).. so I haven't lived an immaculate life. I guess what I'm trying to say is that the notion that North Americans get this because we live too pristine a life certainly doesn't jive with my experiences.
I got this illness, yet my parents, and the siblings I grew up with, never did.
Go figure. And every spring, we'd all get treated for worms, without fail. just a traditional farmers precaution, as we knew what we were exposed to daily.
 
Yeah, that was actually supposed to be sarcastic as I originally posted the news article about the test regarding people living in the country and Crohn's disease. An article I found rediculous, by the by. I lived in the country myself quite frequently when I visited my Dad every weekend, went in outhouses when I went to West Virginia to visit my great grandpa and drank plenty of well water, some of which was dredged up right in a bucket, drank spring water coming down off a mountain, was near manure, biting flies, fed horses carrots from my Dad's garden, played in dirt, petted cows, ate vegetables pulled straight from the garden and still got Crohn's.

What they really need to look into is the difference in genetics, not whether a person has bacteria or worms or whatever other simple eureka they keep trying to find. Things aren't always simple.

With all the genetic warning klaxons going off I'm inclined to believe it's more like a genetic mutation. Wolverine gets cool claws and regeneration and I get Crohn's disease. That's hardly fair.
 
Yeah, but Hugh Jackman, who portrayed him in the movies, isn't as handsome as you or me... so it all balances out. (course, he did get to makeout with a half dressed Halle Berry...) on second thought, life isn't fair after all. Go figure
 
Helminthic Therapy

Sorry for my tone in the earlier post folks, I got irritated because it seemed to me that up that point the replies were not founded on anything but reading the original post. And yes, the rant was a nice relief.

But I have read enough about Ovamed (http://www.ovamed.de) and Autoimmune Therapies (http://autoimmunetherapies.com) and the treatments they offer to know that they work better for Crohn's, for more people, with fewer risks and than anything else I have read about. And that includes remicade, prednisone, etc.

Although both their sites are commercial they both offer a lot of links to independent research. Be prepared to devote hours or days to learning about this. It is well worth the time.

If you also search the online medical research publishers (Lancet, British Medical Journal, New England Journal of Medicine) you find a lot of very recent studies that strongly indicate that this therapy works for Crohn's and Colitis, but also for Multiple Sclerosis, Asthma and perhaps other diseases like Rheumatoid Arthritis. All are related to inflammation due to an immune response (asthma is not an autoimmune disease), and that is the immune pathway that helminths down modulate. You can also search the specialized medical publishers, like Gut.

You can do a search on "crohn's hookworm" or "crohn's whipworm". Loads of news articles, links to research, personal accounts.

Visit the Helminthic therapy page on Wikipedia (http://en.wikipedia.org/wiki/Helminthic_therapy), a nice summary.

And there are plenty of anectdotal accounts of people "curing" their hay fever or asthma using this approach. Surely we have all read about the guy who went to Cameroon to infect himself with hookworm and in doing so cured his asthma? http://asthmahookworm.com. And the original post in this thread is by no means the only one I have read like it.

Ovamed keeps a forum that is open to the public, too. Ovamed.de. I doubt they allow the really pissed off people for whom this doesn't work (25% approximately). But they sure have a lot of posts and users, so it sure is working for a lot of people.

I am fascinated by the topic, and as much I am fascinated by the total lack of traction this treatment has with the public because of their upbringing. Everyone "knows" worms are bad, right?

Sewers were an enormous change, they eliminated many diseases, including intestinal parasites. Isn't it possible that such a change could have unintended consequences?

The epidemiology alone, tracking the rise of autoimmune disease in the industrialized world, and not at all in the third world, as conditions became more sanitary should be cause enough to give this idea credence. The over arching idea is called the Hygiene Hypothesis. Wikipedia again does a good job summarizing it.

People react with knee jerks to this concept. Its a pity, doing so is depriving many of them of the best potential they have to put their terrible diseases into remission. On the other hand there are a lot of dishonest people shilling complete crap to sick, frightened and desperate people.

But in this case the scientific evidence is inarguable. It works for a large majority of people with few if any side effects.
 
Hi FQ,

Good to see you back with more info! Glad you are also on the upturn after your rant ;-) Nowt like a good rant sometimes, clears the air wonderfully!

You have made some interesting points and yes I will research it some more. I think the hygiene aspects come into play with many things like asthma etc as you mentioned.

Yes folk react fast to this type of therapy because of what their minds project in relation to "worms" and overall concept they are bad news as you rightly pointed out.

I have seen larvae therapy work wonders and also leeches in clinical practice so am not averse to thinking along these links. As someone has already pointed out however they have the potential to "travel" elsewhere in the body unlike the other two I have mentioned.

Will do some reading and comment further. I am certainly intrigued by it.

Have you tried this yourself?? You say you are fascinated by it all so I get the impression you haven't as yet.. Perhaps you dont have IBD but rather have a relative that has it?
 
I think I would try the parasite treatment before I would use an immune suppressor. But I am used to using unconventional treatment methods. I do not like treatments that can cause harm, but some times there is a trade off you cannot avoid.

If I can control my symptoms without either I would prefer to go that route.

I never rule out anything. It is a matter of disease status vs risk.

If a person wants to look at why rural people do not get Crohn's as often, one thing I would suspect is Chlorinated, Fluoridated, water supply in the cities.

Dan Bergman
 
I would think that, with enuff patients responding positively to TSO therapy, no legitimate GI would ignore it, or refuse to explore/offer it to their patients. That it doesn't seem to be a first/second/third line of defense in fighting CD raises the question 'why'?. Can it be because the testimonials are anecdotal, or that the studies supporting it weren't performed at an arms length from the vendor?
I dunno. Far from being medieval, leeches are used commonly in medicine today and doctors know this. I can't see any medical practioner worth their salt turning their backs on this form of therapy for the inane reason that it uses worms. i mean, some of the stuff they prescribe is right out of a toxic cookbook... that doesn't stop them. Or how about 'radiation' therapy.. thats pretty frightening concept.. Yet it's used. If it works, and provides a better chance of doing good that doing harm, they trot it out as treatment pronto.
So, if the number of great GI docs I have seen didn't even suggest it YET, my question is 'WHY'? Actually, I'll put that question to my GI on my next visit. I suggest others considering this treatment do the same. Unless you believe in the theory that they already have a cure, but are suppressing the information to maintain their profitable GI practice... or something else along those lines..

BTW.. Us farm raised kids spent majority of our lives drinking well water, with no flourine, chlourine or other treatment. And, in an adoptive family of seven, I'm the only one with IBD.. yet within my biological family, 80% of us have it.
 
I do not think Flourine or Chlorine causes Crohn's either. It is more like a possible allergic response like certain foods and only in sensitive individuals.
There most likely is some reason Urban people get Crohn's symptoms at a higher rate. This is just one obvious difference and there are probably many other variables as well. It is just speculation on a possibility.

My niece was sick all of the time when she moved to a metro area. At least two doctors could not find the reason for the illness. Her skin would break out terribly and her mental state was not good either. I told her to quit drinking the water just in case it was giving her trouble. I also knew the water supply had more than the usual amount of Chlorine since you could smell it. It tastes bad and when I was a kid and lived there I hated the water. My city water is chlorinated also but you cannot smell the Chlorine. She quit drinking the tap water and her symptoms went away one by one. A lucky guess, but it worked. She has been well now for two years. She just happened to be the exception to what is normally harmless in a majority of people.

I would speculate that the Crohn's disease is equal more or less between the two groups but something sets off the flare more often in Urban population.
Whatever that would be remains to be seen.

Not too many people will be diagnosed until they are symptomatic, like myself.
If I would not have flared I would likely have died never knowing I had the disease. I think the difference lies in the symptomatic people with Crohn's vs the non symptomatic ones with the disease. The Urban population is symptomatic more often, although it is possible the number of people with the disease is still the same.

I hope that makes sense. I am not putting that forth as a fact, just one out of many possibilities.

Dan Bergman
 
Well, if the numbers I've heard are right, and the highest rate of IBD is here in Nova Scotia (1 in 300).. it begs the question... Why isn't the highest rate in a more urbanized area? Why here, which is a predominately rural area? I mean, its one of the smaller provinces, there are only a few mass urban areas. When I moved from an even more rural, remote part to a highly urbanized area, the first thing I did was put down roots outside of the urban core. I lived in the country, a little slice of heaven right on the ocean, with a nature trail in my back yard that went for miles. Literally, I was 20 miles from the city, we didnt' have city water, or sidewalks, or close neighbours, not so much as public transit because we were so far removed from the hubub of the urban area. If treated water, or airborne pollutants, or close proximity to the neighbours played a part, the predominant 'groups' of IBD disease sufferers should be clumped in groups in the larger urban areas of the most populated areas,,, not in quiet little backwaters like the one I was born in, or lived in for the past decade... Again, this is all speculation, just because nothing makes sense as far as this illness goes. You know, you just have to chuckle at it...
 
Helminthic therapy - mis-migration of TSO possible, none seen in hookworm

Hi, your echo of an earlier point about mis migration of these organisms reminded me of something I had read recently somewhere else. I managed to find it, too.

It is a proof of concept study out of Nottingham in which they praise hookworm as the model organism for this type of therapy because of its benign nature, that fact that it doesn't mis migrate and that the only problem it can potentially cause, anemia is impossible at therapeutic doses of hookworm for someone on a decent diet. ie. not malnourished.

You can read it for yourself here, although you will need to register for a free account to read most of the publicly accessible portions.

Really interesting stuff.

http://gut.bmj.com/cgi/content/full/55/1/136

soupdragon69 said:
Hi FQ,

Good to see you back with more info! Glad you are also on the upturn after your rant ;-) Nowt like a good rant sometimes, clears the air wonderfully!

You have made some interesting points and yes I will research it some more. I think the hygiene aspects come into play with many things like asthma etc as you mentioned.

Yes folk react fast to this type of therapy because of what their minds project in relation to "worms" and overall concept they are bad news as you rightly pointed out.

I have seen larvae therapy work wonders and also leeches in clinical practice so am not averse to thinking along these links. As someone has already pointed out however they have the potential to "travel" elsewhere in the body unlike the other two I have mentioned.

Will do some reading and comment further. I am certainly intrigued by it.

Have you tried this yourself?? You say you are fascinated by it all so I get the impression you haven't as yet.. Perhaps you dont have IBD but rather have a relative that has it?
Click to expand...
 
FQ1513 said:
And there are plenty of anectdotal accounts...

Ovamed keeps a forum that is open to the public, too. Ovamed.de. I doubt they allow the really pissed off people for whom this doesn't work (25% approximately). But they sure have a lot of posts and users, so it sure is working for a lot of people.
Click to expand...

Anecdotes and testimonials are of no value as scientific evidence.
 
not just anecdotes

there is way more to this than anecdotes and testimonials. Do a google search on "helminths crohn's"

University of Iowa and Nottingham University have published quite a lot on this topic, and the results are clear. Over 70% remission in Crohn's patients who were non refractive to traditional therapies.

One reads about the side effects from remicade, prednisone, etc., and one wonders why there is so much resistance to trying a few worms? Because, again, the science is clear, there are few if any side effects from this approach and it works.

The truth is people find it repugnant and react emotionally.
 
The idea isn't exactly appetizing, but then again... bombarding my body with the toxins that I have been taking, or having a 6 ft long mechanical instrument snake it's way inside me, or having feet of my colon surgically removed.. None of these were on my Christmas list. If my GI, or any of the GI or specialists I have seen offered me a treatment that carried a legitimate 70% chance of remission, I would be there with bells on. Regardless of how unappetizing it may sound. So all I have to do is take these pills doc, and I have a chance at remission? Course, remission isn't a cure, but it will do till a cure comes along. What's the downside doc? Don't ask whats in the pills! OK
I don't care what's in the pills. I mean, some of the traditional meds that I've taken had radioactive elements to them... and I'm a product of the old 50's 'duck N cover' generation. So, please, when you make statements like this..

FQ1513 said:
The truth is people find it repugnant and react emotionally.
Click to expand...

Then don't include me in that generalization.. My reason for not jumping on the bandwagon is that no one in 'my' medical community is as convinced as you are on the safety or efficacy of this treatment. for their own reasons.
 
Rural living vs. urban, age, third world vs. first

Having read some stuff about the hygiene hypothesis it seems to have a lot to do with how old you are when you are exposed to "dirt"

If you grew up on a farm in the first world you are far less likely to suffer from any manifestation of autoimmune disease or allergy.

If you are born and raised in the third world but emigrate to the first world before age 15 you have the same chances of developing something like Crohn's as the place you move to. If you delay emigration to the industrialized world until you are sixteen or older then you keep the autoimmune profile of the area you originated in throughout life.

An experiment was also done where they gave new born children an oral dose containing four or five killed bacteria and viruses (don't remember which). Those children were less likely, substantially less likely, than the control group to develop allergies later in childhood.

So it isn't where you live, but where you grew up and how much of your childhood was spent there.

Makes one think when one sees mothers telling their children "Don't put that in your mouth!"

As to Novia Scotia, I picture a fairly cold place, not the ideal breading ground for bacteria and intestinal parasites. Of course, they installed sewers, too, and ruined everything...

Kev said:
Well, if the numbers I've heard are right, and the highest rate of IBD is here in Nova Scotia (1 in 300).. it begs the question... Why isn't the highest rate in a more urbanized area? Why here, which is a predominately rural area? I mean, its one of the smaller provinces, there are only a few mass urban areas. When I moved from an even more rural, remote part to a highly urbanized area, the first thing I did was put down roots outside of the urban core. I lived in the country, a little slice of heaven right on the ocean, with a nature trail in my back yard that went for miles. Literally, I was 20 miles from the city, we didnt' have city water, or sidewalks, or close neighbours, not so much as public transit because we were so far removed from the hubub of the urban area. If treated water, or airborne pollutants, or close proximity to the neighbours played a part, the predominant 'groups' of IBD disease sufferers should be clumped in groups in the larger urban areas of the most populated areas,,, not in quiet little backwaters like the one I was born in, or lived in for the past decade... Again, this is all speculation, just because nothing makes sense as far as this illness goes. You know, you just have to chuckle at it...
Click to expand...
 
No problem. Now let me make one.. Think that the reason this treatment isn't trotted out yet by the gentry set amongst the GI community is that it isn't yet considered a 'mature' treatment. It's still in the 'trials look good, but lets wait till its established' frame of reference for most of your typical practioneers. The reason? Could be as you speculate, docs think that patients wouldn't jump at it. or they fear possible lawsuit.. or the numbers for this therapy aren't of that significant an improvement over traditional therapies to make it worth the gamble.. what do I mean? I've been told my chances of remission on metho would be about 66%... for the 1st year. And its an established methodology, with a pedigree of more than a decades use.
 
I've been looking into it and one of the main things I cannot find anywhere is what level of Crohn's these test subjects had, whether they have any type of lesions, scar tissue, strictures in their digestive tract, whether they've had operations in the past, what else they were taking during the treatments,etc. And I even found where the guy doing the original testing says the tests were only preliminary tests, promising to be certain, but preliminary nonetheless. The preliminary test only had 29 Crohn's patients in it, which makes 70% not as impressive as say 1000. This is why we say that there seems to be not enough testing done to warrant using it at this time. I found another article that said something about using 100 people so I also can't find a definitive area that has all their studies in one place. I want to know what the possible long term use effects could be before I try using it and I'd like to see much more testing done first.

You seem to think (by the way you worded your poll) that people are arguing against it because we think that worms and bugs are "icky", but that's far from the truth here. I just don't see much in the way of cold hard facts to warrant my wanting to use it. Mayhap in a year or two, after those in remission report that they're still doing ducky and more testing is done on the long term effects I'll consider it.

Another issue I have with the doctor himself is that he claims that if we'd just kept getting worms (those aren't natural flora) and not taken stuff to get rid of them we'd be better for it (I had worms and it caused cramping and bloody stools, even had a tape worm once), but that's far from the truth also. Human Helminth are a completely different critter than Pig Helminth in their ability to live in the human bowels. The Pig Helminth can't really do it's thing in our bowels, but the human strain can and the human strain would be what most of the human population would have. The human strain is what most of these third world nations he talks of has. In small amounts it's not quite so bad, but if they are allowed to procreate in our systems:

* Light infections: Patients with fewer than 100 worms are frequently asymptomatic; however, they may present with lower abdominal discomfort, flatulence, and diarrhea or constipation.

* Heavy infections

o Patients with heavy infection have hundreds to thousands of worms and may present with lower or epigastric pain, vomiting, abdominal distension, anorexia, weight loss, anemia, diarrhea, tenesmus (painful straining), and rectal prolapse.

o Trichuris dysentery syndrome is observed in heavy infections and characterized by bloody mucoid diarrhea, small frequent stools, tenesmus, anemia, and growth retardation.

Sounds a lot like we'd be trading one set of permanent symptoms for another if those were allowed to grow in our systems.

I'm glad they stumbled upon a possible alternative therapy by using a "friendlier" strain of helminth, but saying that we never should've gotten rid of our worms sounds a bit erroneous.

I'm done.
 
FQ1513 said:
there is way more to this than anecdotes and testimonials. Do a google search on "helminths crohn's"

University of Iowa and Nottingham University have published quite a lot on this topic, and the results are clear. Over 70% remission in Crohn's patients who were non refractive to traditional therapies.

One reads about the side effects from remicade, prednisone, etc., and one wonders why there is so much resistance to trying a few worms? Because, again, the science is clear, there are few if any side effects from this approach and it works.

The truth is people find it repugnant and react emotionally.
Click to expand...

I posted the one and only clinical trial I could find. It is preliminary and promising but far from inarguable.

The truth is that this is an experimental therapy in the initial stages of testing and that the risks of it are not yet known. You can repeat that bity about people not liking it just because they are icked out as often as you like but that doesn't make it true. You can say the science in inarguable all you want too but it isn't and saying it is over and over does not make it so.

People are not uncritically embracing this because the evidence does not support such an uncritical embrace. That is the truth.
 
balancing risk

All good points, but contrast the risks associated with a moderate hookworm infection, the 50 cited in the recent Nottingham study that resulted in 100% remission in the pilot group (study ongoing) of five CD patients.

You won't get anemia, you might get a stomach ache for a couple weeks and maybe diarrhea.

Contrast that with active CD or UC. Stomach ache, diarrhea, epigastric pain anyone?

If it doesn't work what are you out. that same Nottingham study says hookworm do not cause any problems associated with other helminths. No mis migration, no disease. The only risk is anemia and it is a non factor at 50 organisms.

I do think it is in part the ick factor. To me balancing the potential risks (you are out some cash) vs. the potential payoff (remission after 45 weeks) it is a no brainer.

But that is just my opinion.

I too am done here.
 
I think it would be hard to tell other people how you are treating your disease.
I can imagine the reactions.

It would be fun to tell someone you are using worms to treat your Crohn's and accidentally roll a rubber worm off of your tongue. The possibilities for pranks are numerous.

Seriously, I would still be a little concerned about the migration over a longer period of time. That would not stop me from trying it if the situation demanded action. But it would be hard to take the first dose. Alright I will admit, it is icky.
But I have done a lot more icky things when I had to.

Best Regards

Dan Bergman
 
Probiotics

Just tell folks you are using probiotics, which of course you are.

Of course the potential to hold the floor at any party or gathering, probably not one involving a meal, is huge and would be hard to resist.

The possibilities really are endless though. Of course some might find it so hard to, uhh, stomach that you might alienate them.

I can see a lot of people leaning away from you as you explain it and worrying about allowing their children to play with yours, assuming one has them.

But, if that was the price for remission, I think I could handle it.
 
Yeah, telling people at a party how u r treating your Crohns could be priceless. And, depending on their reaction, you could tell them that if this treatment does the trick, u r going back for the 'trained moles therapy' for your haemerhoids.
 
1 in 300? holy crap

I've done a ton of research about whipworms and it seems like a good idea to me, but i'm gonna wait until some more studies are finished (which are going on right now).
 
Hey, we should start our own multi denominational 'church'. Call it 'Holy Crap'. As such, we could apply for tax exempt status, and use the money from the collection plate to pay for IBD research. And instead of singing, our choir would just pass gas, in tune, so that regardless of what language they spoke, all of our parishoneers (sp?) could 'fart' along. And our pews actually would be, and each would be a toilet seat... and our pipe organ would be made from old plumbing... and our holy water would be a pretty shade of blue... And I better stop now, or when I go to my reward, St Peter will let me in the Pearly Gates, but no one will give me the key to the Angels washrooms..
 
OK guys I've read all this and the only question I have is where to buy TSO from a reliable source - website or whatever? I am much less squeamish about worms than about the scary side effects of the immunosuppressive drugs. So if someone can get me started I will report back.

KBO
 
You can't be serious. You're going to buy something to put into your gut, based on a recommendation from some stranger on the internet?

I have this bridge for sale..... email me. :D
 
Hi. I just wanted to tell everyone first hand of my experience with TSO. My name is Anna and I'm from Iowa. In 2003 I was fortunate to be involved in a clinical study in Iowa City with my Dr. Weinstock. It had put me in remission until now. So about 9 years.... No frequent urgency, I could eat anything...even ice cream, no blood in my stool and I actually had solid BM's. Off of all my meds for 9 years. What i had experienced was complete remission. I have had ulcerative colitis since 1999. I am trying TSO again because it gave me such success. I suffered for so long with a disease that limits everything i did, I was willing to try just about anything. It's not gross. They are microscopic eggs. I am not a sales rep, etc. you can even look me up from the episode from the BBC- body snatchers. They filmed my experience with the study. I know some have tried it and it didn't work, for me it did along with many others in the study- especially for Crohns patients. And I'm hoping it will again. This is only my 2nd week of therapy so I'm trying to stay positive. I just wanted to give other's hope that they may have a symptom free/ med free life. Good luck to everyone! Here's to beating this disease!
 
Thank you for sharing your experience Keajg. Would you be interested in starting a thread here of your own and detailing your experience this time around? It would potentially help MANY people.
 
My son suffers from Crohn's since 3 years. He has not reacted well to anything conventional short of biologics. Have researched TSO for over a year now. We even visited the company in Germany. I have ordered TSO through the Thailand link. However, there will be a study starting soon in the US administered by Coronado Biosiences. 4 weeks ago we started with TSO, 10 doses - one every 2 weeks. So far not much change but no side effects.
 
Keajg - I second what David said. It would be very helpful if you could start a new thread and let us know how it works for you.

MontBlanc - If you could do the same that would be great. I know there are many people who are interested in this therapy, but do not have a first hand account of the treatment and how it works.
 
We are at week 6 after 3 TSO doses (1 x 2 weeks). My son is doing worse since 10 days, cramps, bloating, throwing up, and the usual. Similar through what he is going through with infections. We'll be seeing the GI later today. Will keep you posted.
 
Ok so here is my testimonial... I was in a clinical trial in 2003 in iowa city, ia. These put me in remission for 9 years. I am currently in another TSO trial since I flared in 2012 and haven't responded to any meds. So if you google Anna GlanZ eats worms you will find an article the BBC did on my experience. I couldn't post the link :(
 

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