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Article on Hookworm therapy for Crohn's Disease

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ekspain

Guest
I have ulcerative colitis and am taking Helminths TSO1000 at the moment. I was taking 2500 before. I'm doing very well. Its really the only thing that helped but its EXPENSIVE!
 
Yes, I think I may try this if/when Remi stops working for me.
It's not that disgusting. We have billions of organisms living in
our bodies already.
 
E

ekspain

Guest
yeah remicade's gotta suck. I'd rather take harmless parasites that could put me into remission. The cost, however, for them little critters- is quite high.
300 Euros min. Although, Aspelia pharma looks promising, there is no product as of yet. I believe.
 
What would be ideal is if they could figure out what these guys secrete
that calms the immune system down. if they could bottle and sell that,
it'd be gold! Also, the method of getting the critters into the body is no
good. So far I hear you have to put them to your skin as a patch on your
arm, then they travel to into your lungs, where you cough, and then they
get swallowed where they get to your tummy, finally. Why can't I just
swallow them and avoid the whole creepy lung thing? :ylol2:
 
I would bet quite a bit of money that the Hook Worms, by one mechanism or another, just reduce problem bacteria causing symptoms. I am 90% certain they do not directly affect the immune system.

This theory is far fetched in my opinion, and is pretty much a stand alone theory that has no proposed mechanism or historical precedence.

I think the relatively straight forward explanation that the Hook Worms compete or consume these unhelpful bacteria seems far more likely.

It is all just based on probability, but common explanations are more frequent than uncommon ones in real life.

Dan
 
MINI Cooper said:
What would be ideal is if they could figure out what these guys secrete
that calms the immune system down. if they could bottle and sell that,
it'd be gold! Also, the method of getting the critters into the body is no
good. So far I hear you have to put them to your skin as a patch on your
arm, then they travel to into your lungs, where you cough, and then they
get swallowed where they get to your tummy, finally. Why can't I just
swallow them and avoid the whole creepy lung thing? :ylol2:
Thats not true sista! I drink the stuff, and I have no side effects. No coughing etc...thats all propaganda by the medical co. who want to make money off of people taking their meds forever...
The only thing is, I don't know if I can last through summer, yet, without a flare up. That will be THE test. If I can get through to Sep. without any issues, I'll be a true believer. But as of yet, I've had little or no symptoms since December, and I've stopped all meds. So....lets wait and see.
 
D Bergy said:
I would bet quite a bit of money that the Hook Worms, by one mechanism or another, just reduce problem bacteria causing symptoms. I am 90% certain they do not directly affect the immune system.

This theory is far fetched in my opinion, and is pretty much a stand alone theory that has no proposed mechanism or historical precedence.

I think the relatively straight forward explanation that the Hook Worms compete or consume these unhelpful bacteria seems far more likely.

It is all just based on probability, but common explanations are more frequent than uncommon ones in real life.

Dan
According to the article, it DOES affect the immune system.
And people in third world countries where these parasites are common,
do not get these digestive diseases.
So it seems plausible to me.
 
Ekspain said:
Thats not true sista! I drink the stuff, and I have no side effects. No coughing etc...thats all propaganda by the medical co. who want to make money off of people taking their meds forever...
The only thing is, I don't know if I can last through summer, yet, without a flare up. That will be THE test. If I can get through to Sep. without any issues, I'll be a true believer. But as of yet, I've had little or no symptoms since December, and I've stopped all meds. So....lets wait and see.

But that is how the worms travel to the gut:

"Within 3-5 days, the larvae break through into alveoli and travel up the ciliary escalator from the lungs into the bronchi, the trachea, and the pharynx. Upon reaching the pharynx, larvae are swallowed and gain access to the GI tract. Once in the GI tract, worms attach to the wall of the intestine and begin to feed on the blood of the host."

"Pulmonary complaints such as cough or wheezing are generally less common than in A lumbricoides infection."

-http://emedicine.medscape.com/article/788488-overview
 
I would have lost a large sum of money. I looked into it further and this is a common characteristic of parasites. They prevent detection and destruction by the immune response by chemically altering the environment.

That makes sense to me, and this hiding ability is also present in some bacteria as well.

I still do not buy the part about toning down a hyperactive immune response to normal bacteria. It would knock down the immune response and I am sure that is helpful symptom wise. The part I do not agree with is that the immune system is hyperactive. I believe it is continuously trying to kill bacteria that is not beneficial to the person. It is not able to kill it and it results in a constant inflammatory response.

You can get relief by either of two methods. Lower the immune response, and prevent reaction to the bacteria, increase the immune response enough so it can kill the offending bacteria.

It explains why both drugs that dampen the immune response work, and why Low Dose Naltrexone also works. It also explains why both type of drugs can work most of the time and yet will not work in some people.

Boosting the immune system has to result in an immune response strong enough to allow destruction of the bacteria. If it does not, then you just have a stronger ineffective immune response which would not help and may even be worse.

Contrarily, if the immune dampening drug does not weaken the immune response enough, it will still respond to the bacteria ineffectively as it has before. You may be slightly better if it allows for less inflammation. I would guess that is why it works in the first place.

The long term effect is that now you have less immune system ability to rid yourself of the secondary problem of the bacteria. Maybe the other bacteria present will hold it in check, maybe it won't. Who knows what happens in the world of bacteria?

I think it is better to rid yourself of the bacteria in the long run. The medical consensus does not attempt to do this. There are some gastro researchers that are trying this approach, but they are in the minority.

Dan
 
MINI Cooper said:
But that is how the worms travel to the gut:

"Within 3-5 days, the larvae break through into alveoli and travel up the ciliary escalator from the lungs into the bronchi, the trachea, and the pharynx. Upon reaching the pharynx, larvae are swallowed and gain access to the GI tract. Once in the GI tract, worms attach to the wall of the intestine and begin to feed on the blood of the host."

"Pulmonary complaints such as cough or wheezing are generally less common than in A lumbricoides infection."

-http://emedicine.medscape.com/article/788488-overview
hmmm...isn't that if you use that patch thingy? I'm not sure it works that way if you drink it! check out the ovamed site in Germany- it explains things really well- in English. In any case I haven't noticed any side effects like this. But everyone's different. I have noticed I feel better, but I still don't eat junk food. I stick with healthy veggies, no meat except fish. But even with the healthy diet, if I miss a dosage of the helminths my gut feels weird. They say that I may be able to maintain remission after a goodly amount of dosages. But again, everyone reacts differently... I still feel like I need to take the stuff. I'm hoping I can stop taking it in october maybe....
then see what happens.
 
D Bergy said:
I would have lost a large sum of money. I looked into it further and this is a common characteristic of parasites. They prevent detection and destruction by the immune response by chemically altering the environment.

That makes sense to me, and this hiding ability is also present in some bacteria as well.

I still do not buy the part about toning down a hyperactive immune response to normal bacteria. It would knock down the immune response and I am sure that is helpful symptom wise. The part I do not agree with is that the immune system is hyperactive. I believe it is continuously trying to kill bacteria that is not beneficial to the person. It is not able to kill it and it results in a constant inflammatory response.

You can get relief by either of two methods. Lower the immune response, and prevent reaction to the bacteria, increase the immune response enough so it can kill the offending bacteria.

It explains why both drugs that dampen the immune response work, and why Low Dose Naltrexone also works. It also explains why both type of drugs can work most of the time and yet will not work in some people.

Boosting the immune system has to result in an immune response strong enough to allow destruction of the bacteria. If it does not, then you just have a stronger ineffective immune response which would not help and may even be worse.

Contrarily, if the immune dampening drug does not weaken the immune response enough, it will still respond to the bacteria ineffectively as it has before. You may be slightly better if it allows for less inflammation. I would guess that is why it works in the first place.

The long term effect is that now you have less immune system ability to rid yourself of the secondary problem of the bacteria. Maybe the other bacteria present will hold it in check, maybe it won't. Who knows what happens in the world of bacteria?

I think it is better to rid yourself of the bacteria in the long run. The medical consensus does not attempt to do this. There are some gastro researchers that are trying this approach, but they are in the minority.

Dan

whatever the case maybe, its undeniable the number of crohns and uc sufferers who are getting into remission thanks to helminths. And if your willing to try remicade, you should darn well be willing to take harmless pig whipworms, that don't cause cancer. Check the Ovamed site, and you'll find some info. There was a doctor from the University of Iowa who researched this stuff, I believe his name is Weinstock...check that out too. When I started this stuff, I was searching for any and everything. No medicine worked, no diet helped! It was a nightmare. I'm still not cured, but I thank God for another day in remission- Its been pretty stable now, since December...so I'll have to see how things go this summer, which is when my flares were generally the worst.
 
It is an interesting therapy, that I would like to keep track of and see how it develops. You never know if a back up plan will be needed in the future.

I hope this Summer is a symptom free one for you.

Dan
 
I agree, if it is working then it is hard to argue with success.

I have used treatments that are experimental and largely untested. I do not regret trying any of them, while most failed, some worked spectacularly.

This has some track record already and if it can help people, I am all for it.

Dan
 
mini and ekspain--maybe theres two different ways to take the worms? you said that you drink them, ekspain, and mini was talking about a patch, which involves no drinking right?
i wonder why anyone would do the patch method, drinking them sounds a lot more direct. you swallow them right into your belly!
 
kello82 said:
mini and ekspain--maybe theres two different ways to take the worms? you said that you drink them, ekspain, and mini was talking about a patch, which involves no drinking right?
i wonder why anyone would do the patch method, drinking them sounds a lot more direct. you swallow them right into your belly!
Yeah I drink mine. Its really not disgusting at all. In fact if you didn't know they were actually helminth eggs, you would never know the difference unless they did a blood test. The patch that I've heard about seems really a nuisance. Maybe cuz the drinking method has been patented or something, they were obliged to invent another way- the patch really does sound icky.
But hey if it works- I'm really not that grossed out by this stuff, though- and I don't really understand why some of us are. We have bacteria and other living things galore in our bodies anyways...
 
Yes I would prefer to drink them to avoid the whole lung thing.
That is just creepy to me. Good to know they have a drinking method.
 
It took me awhile to get used to taking probiotics since it is basically eating pure bacteria. A person does not really think of food as living organisms, but food has bacteria, insect larvae, and probably many other things we would rather not know about. Just take a close look at your flour and you will find bugs in it.

Hook worms? why not, I have likely ate worse things. I had these small tape worms from animal fleas. Apparently they do not help like hook worms because I discovered these after a CT scan when at my worst. The contrast liquid killed some of them. I purposely killed the rest of them.

At least the Hook Worms are not visible. The tape worms are.

Dan
 
L

luke

Guest
kello82 said:
mini and ekspain--maybe theres two different ways to take the worms? you said that you drink them, ekspain, and mini was talking about a patch, which involves no drinking right?
i wonder why anyone would do the patch method, drinking them sounds a lot more direct. you swallow them right into your belly!
I started the hookworm treatment that requires the patch in September for my Crohn's disease. The difference in the two methods of delivery has to do with the life cycle of the type of helminths. Necator Americanus requires entry through the skin where it eventually finds its way to your gut where it will live for 3-7 years. The good news is that during the trip through your lungs, you can't really feel anything. You might cough, but you could be coughing from pollen or allergies. It's not as if you are coughing up earthworms :) My guess is that pig whipworms can make the adjustment to the gut immediately, which is why you can swallow them.

There is an itching sensation where you place the patch, but it can feel as mild as a mosquito bite (though like everything, it differs for every person). The good news is you only have to do it every 3-7 years.

If you're considering it, I would definitely suggest doing your homework. I got mine from autoimmunetherapies.com after they sent me research papers on the topic of helminthic therapy. There are a lot of people out there trying to make a buck and since it's not regulated by the FDA it's up to you to make sure it is safe.

If your interested in how my experience has been, I'm blogging about it at: www.lukecology.blogspot.com

If helminthic therapy works I want people to know about it. In the same way, if it doesn't work, I want people to know to stay away. Either way, I'm glad to find others talking about it!
 
Thanks for the info.
I am doing this next if Remi stops working.

'Coughing up earthworms' LOL. I gagged just reading that. :ylol2:
 

imisspopcorn

Punctuation Impaired
Wow....Thanks for the info.

Are these worms able to travel to the brain? Are they the same type that use to be in under cooked pork?
 
L

luke

Guest
imisspopcorn said:
Wow....Thanks for the info.

Are these worms able to travel to the brain? Are they the same type that use to be in under cooked pork?
One of the reasons for using Necator Americanus (human hookworm) is because it doesn't "transmigrate." Having worms in your brain is one of the reasons why just any ol' worm won't do! I don't think the pig whipworm is the same as the kind you can get from pork, but I haven't done as much research about them.
 
L

luke

Guest
MINI Cooper said:
oh and one more question.
Can I easily get rid of the if I decide I dont want them anymore??
After multiple trips on Prednisone and the joys of its lasting effects, I was ready for something that didn't hang around when I was ready to be done with it. The great thing about hookworms is that you can take a pill and kill them within 48 hours. You can also kill them with "laughing gas" from the dentist, which I suppose would be more fun...
 
Luke - thank you for hopping on here and contributing this information. This is one of those things that will probably only get figured out through self research since it will probably never get official funding.

P.S. - love the pic blog too - very nice sunrise shots!
 
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I'd try it!!! Anything!!! I just can't believe they do not have a cure or better treatment for crohns!!! I find it unbelievable!!!
 

imisspopcorn

Punctuation Impaired
You know what scares me...The worms are coming from Mexico...I would rather they came from the USA or Canada. Does that bother anyone else?
 
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At the university and hospital here in my town they are conducting testing and research on hookworm treatment in people with Crohns they are do trial testing and I know of some people who are on the trial. Not sure how its going but I thought that was great they were looking further into it considering its not a formal medication and more of a therapy. I would not have an issue having hookworms in me if it meant getting off all the other meds Im on and not rattle everytime I move.. ha..ha.. ;)
 

Crohn's 35

Inactive Account
There are a few who are on this hookworm thing but "Loves to Travel" is one that I can remember but she hasnt been on lately, because for the most part it was working. Others have too but they arent here either. Could be a worthy thing to look into? I heard it was very expensive tho.
 
This hookworm thing makes me nearly barf in my mouth a little just to talk about it :p

But seriously, exciting stuff to hear people talk about it...wonder how long it will take for works medical coverage to cover this? :p
 
hmmm... not so sure about the helminths.

i know it is all down to personal experience but i had a go at them a couple of years ago.

it's very expensive - i spent 3 or 4 thousand aussie dollars at the time... with no discernible effect. they were being made by a german company at the time and i monitored their forum closely - from what i could see the successes of the medical trial did not seem to be getting replicated.

bearing in mind that we are all different when it comes to which meds work and which ones don't, i would like to see it becoming a more mainstream therapy before recommending it.
 
helminthic therapy

I read the posts on the forum on helminthic therapy and it's terrible to see the amount of misinformation that's floating around. I have done quite a lot of research on the subject, tried all 3 available organisms used in helminthic therapy, and achieved remission from severe Crohn's, so I'd like to clarify the situation.

There are a total of 3 microscopic organisms used in treatment of a variety auto-immune diseases, in particular we are going to be discussing CD and UC here. There is nothing gross or disgusting about them. We have billions of bacteria living inside of us and we wouldn't be able to live very long without them. We humans lived with other organisms, including helminthic parasites, for millions of years and only started getting rid of them over the last 70-80 years in the developed world. Undeveloped countries (most of Africa and South America) still have them and Crohn's and Ulcerative Colitis are virtually unknown there. Granted, they have a host of other problems and diseases but they don't suffer from auto-immune illnesses. Balance is needed. Modern humans survived to this day because we evolved to have strong immune systems that could keep the number of parasitic organisms in our bodies very low. Those that couldn't, died out and we are descendants of those who survived. Parasitic organisms in turn tried to live as long as possible and since the immune system fight invaders using inflammatory response, they evolved to suppress this inflammation and kept our immune system in check. Now that we got rid of them, after evolving to live in a symbiotic relationship with them for millions of years, our immune systems go haywire and go into uncontrolled inflammatory responses. There has been a lot of research on helminthic therapy over the last few years. I am working on a wiki site on which I am posting articles from major medical journals. If you google "open source helminth therapy" and then click on the "Helminth Wiki", on the "Studies & Papers" on top there's a link to google docs repository of all these articles. Some are very heavy on immunology but are highly interesting.

The 3 organisms used are:
1. Trichuris suis ova (TSO) is produced by a German company Ovamed, and distributed by a Thailand company Biomonde. It costs a few thousand euro (I think about 3 or 4) for a 3 month supply. It's basically eggs (ova) of a pig parasite that can't live in humans for more than a couple of weeks. It's extremely safe and the remission rates in CD and UC are over 55% which is amazing. However, it needs to be taken every 2 weeks and the remission lasts only while you're taking them. Good but very expensive.

2. Necator Americanus (human hookworm)
Here's the description of the lifecycle of this organism:

Eggs are passed in the stool , and under favorable conditions (moisture, warmth, shade), larvae hatch in 1 to 2 days. The released rhabditiform larvae grow in the feces and/or the soil , and after 5 to 10 days (and two molts) they become filariform (third-stage) larvae that are infective . These infective larvae can survive 3 to 4 weeks in favorable environmental conditions. On contact with the human host, the larvae penetrate the skin and are carried through the blood vessels to the heart and then to the lungs. They penetrate into the pulmonary alveoli, ascend the bronchial tree to the pharynx, and are swallowed . The larvae reach the small intestine, where they reside and mature into adults. Adult worms live in the lumen of the small intestine, where they attach to the intestinal wall with resultant blood loss by the host .

It's really not as scary as it sounds. I received a tiny vial with what appeared to be 3-4 drops of clear liquid. I applied it to a gauze which I affixed to the inside of my arm with a band-aid. A minor itch developed (Benadryl really helped a lot to get rid of it). A few small red dots were visible for a few days after I took off the band-aid 12 hours later. There was no cough, diarrhea, pain or any other symptoms or side effects.

It lives in people for 3-5 years, though there were documented cases when it was eliminated after 1 year or lived for over 7 years. It's very cheap as it's a one time application every few years and the therapy provider guarantees infection for 3 years and will provide additional doses if needed. So the costs is extremely low, only a couple of dollars a day. Remission rates for CD in the small intestine are over 85%. I hope you realize that's nothing short of a miracle to have such high cure rates for CD.

3. Trichuris trichiura (human whipworm)
Lifecycle:

The unembryonated eggs are passed with the stool . In the soil, the eggs develop into a 2-cell stage, an advanced cleavage stage, and then they embryonate; eggs become infective in 15 to 30 days. After ingestion (soil-contaminated hands or food), the eggs hatch in the small intestine, and release larvae that mature and establish themselves as adults in the colon. The adult worms (approximately 4 cm in length) live in the cecum and ascending colon. The adult worms are fixed in that location, with the anterior portions threaded into the mucosa. The females begin to oviposit 60 to 70 days after infection. Female worms in the cecum shed between 3,000 and 20,000 eggs per day.

There's nothing gross about this. Helminthic therapy provider washes the ova in an anti-microbial and anti-biotic solution and they are provided suspended in a few milliliters of a buffer solution. Essentially, I drank half a cup of clear liquid that tasted like water. That was not disgusting at all and I am very thankful I did it since I am now in complete remission.

Remission rates from UC and Crohn's in the colon are over 85% - again, a miracle to have such high rates. Remission rates from a combined therapy of both hookworm and whipworm, and raising vitamin D levels to at least 50ng/ml are over 90%.

I don't feel them, I don't see them, just like I don't feel and see billions of bacteria in the pro-biotic yogurt I eat every day. We live in a very complicated world and getting rid of all these organisms over the last few years is clearly messing with our bodies and our immune systems. I just restored the balance in my body - it's up to you if you want to do the same.
~~~

I had Crohn's for over 15 years(3 surgeries, blood transfusion after GI bleeding, endoscopies, colonoscopies, prednisone, Remicade, Humira, etc) - I went through a lot. You name it, I've done it. I had severe food allergies for over 10 years, I had severe seasonal allergies and I am now in remission. All I take are some supplements: vitamin D, omega-3 fish oil, magnesium/calcium, B12.

Let me know if you have any questions - I'll be glad to answer them.
 
I was looking at this as a serious option for me up until my latest hospitalization. The cost of the worms is quite steep and I also am fed up already. Ostomy here I come lol.. but for those who are interested in this I think it's a fantastic option to explore
 
Thanks for the info. Where do I sign up? Had this thing for 3 years and tried everything. Nothing has worked yet. I'm anxious to try the worms and will let everyone know how it goes!
 
w.wbaltv.com/video/22820045/detail.html

That's me. From an interview I gave earlier last year. I can say from experience that helminthic therapy does work VERY well for me at least. But it is no miracle cure. It does take about 6 months with most people to take effect, and not every one responds (response rates for Crohn's look to be around 90-95% based on small-scale surveys). While your immune system is adjusting to the worms, you will have side effects, such as fatigue, inflammation, fever, and digestive issues. These normally come on for a day or two, then go away, then come back during that 6 month period.

I've done quite well on it, but recently lost my worms and am getting redosed soon. I take no medication when I am on the worms, I can eat anything I want pretty much (except for wheat, which I am allergic to). BMs are 100% normal (1 or 2 a day). Energy is fantastic (you do need to watch for anemia however).


D Bergy: The helminths do modulate the immune response, from what the current research tells us. Not only do they secrete chemicals that directly influence immune activity, but their presence also leads the body to create additional peripheral T suppressor cells (which is verifiable by a T-cell panel). This in fact is the source of the majority of the benefit from the therapy, and it is something that no other Crohn's therapy that I know of does today.

kello82: The "patch method" is used with hookworm, which migrate through the skin (traditionally they hung out on the ground of shared letrene areas and the larvae would "hook" into the foot when you stepped on them. They secrete an enzyme that then opens up the pores, and they 'slip' through, shething off a layer that serves as a decoy for the immune system to attack. They do this process a few more times on their way to the gut.

In reality the process isn't that bad...it's just a bad itch for awhile. I never felt the worms in my throat or had 'the cough'. The other method (swallowing a solution) is for whipworm (and a few others). Pig whipworm (i.e. TSO) only lives in the gut for about 2 weeks or so, do you have to continually reinoculate yourself. Human whipworm can be taken as well (and has greater efficacy for those with UC from what I hear) but will only live for around 8-12 months on average. Hookworm are said to live for 3 to 5, but this last batch I had only lived for a year (I believe something I did messed it up -- there are several drugs and things you can't take while on worm therapy).

imisspopcorn: The reports you hear of these parasites traveling into the brain, etc. are when you get a parasite from one species into another (e.g. if you got dog hookworm for instance). Think about it: the worm thinks its in a dog, so can then misnavigate and you can have a problem. With the human varieties at least, there is no risk of this. They have evolved with us for millions of years, since before we were even human. TSO has proven to be safe as well, and are swallowed anyhow.

CrohnsHobo: I for one would not want to be on the Humira and Methotrexate that you are on. The risk of Cancer and more from those drugs are real. These worms are very safe compared to that (and hookworm is a good deal cheaper if you look at how god awfully expensive those drugs can be). I take no drugs regularly, and I only take Entocort for a few days if I have a flare from eating wheat, which I am allergic to.

Fog Ducker: Certain meds are safe to be on while on the worms (entocort, prednisone, opiates, etc). However, your "worm person" will definitely want to get you as healthy as possible before you are innoculated. Innoculating someone that is in tough shape disease wise is not a very smart thing to do, since it puts additional stress on that person's body, and the environment (with the immune flaring and tissue damage) is not a very hospitable place for the worms. Remember, these are living organisms and they are stressed out by excess immune activity. That is why they have these amazing abilities of being able to influence human immune system mechanics.


One other thing that I have to say is if you are interested in this therapy:
1. DO YOUR RESEARCH. Become educated on this therapy, how it works, the side effects, and if it is right for you. I know for a fact that my worm guy will not take prospective patients that come to him looking for a quick fix, or that have not done their research. These kinds of people are just too much of a risk.

2. Talk to your doctor: I talked to my GI before I ever tried the therapy. If your GI is totally ignorant about it and dismisses it out of hand, get another one. My GI knew A LOT about the therapy and said I could try it out.

3. KNOW YOUR WORM GUY ("host"): I researched my worm guy a ton before deciding to go with him. At this time, AFAIK there are two separate parties out there doing hookworm at least: WormTherapy (wormtherapy.com) and AIT (autoimmunetherapies.com). Both have been doing it for some time. I cannot comment on AIT either way, but Garin over at WormTherapy has been a pleasure to work with and truly cares about the people he treats.

4. DONT EXPECT A MIRACLE CURE: Like I said, responding to this therapy will take time (if you respond at all). Reaching the full efficacy on this therapy can take up to 1 - 1.5 YEARS. These organisms are actually re-engineering your immune system, causing it to produce more peripheral T-suppressor cells. This takes time.

5. LESS IS MORE: This is powerful medicine. On the heels of my last point: be patient with the therapy and take only the worms that you need. Typically most start out at 25 or so worms, and go from there AS NECESSARY. Remember: hosting more worms, or hosting multiple species of worms, will put an additional load on the immune system and the body as a whole, and should only be taken if the amount you currently have is not showing enough benefit, as once you go up I've been told it's hard to go back down (it's kind of a one way street).


Hope that helps. I won't be posting much, but feel free to PM me if you have any additional questions.

Robby
 
@helminthictherapy

I live in Germany and i would love to try either "Necator Americanus" or "Trichuris trichiura" since they seem to yield the best results!

Is there anyway for me to get this treatment here in Germany?
 
After multiple trips on Prednisone and the joys of its lasting effects, I was ready for something that didn't hang around when I was ready to be done with it. The great thing about hookworms is that you can take a pill and kill them within 48 hours. You can also kill them with "laughing gas" from the dentist, which I suppose would be more fun...
There are actually lots of things that can kill them, many are unknown. These critters are quite difficult to maintain. My husband had them for about 5 months (Hookworms) in 2008. We traveled to Mexico to get them since they are not legal here. He got 25 all at once because we had been reading that the trickle method (5 one month, then another 5 the next and so on...) could cause them to die off at re-infection (not sure if this is true). The first 3 months were hell. The side effects were so brutal, he could not hold down water and was in severe pain. He was admitted to ER within a month and it was quite a fight with the Dr's to keep those worms alive! they thought we were crazy. Anyway, we got thru the initial 3 months of hell and it was like turning on a light switch. One day he woke up without pain and only had like 3 bm's the whole day. It kept improving all month and he was able to eat things he couldn't for years. It seemed like he was on the road to remission.

One day he goes to his general physician and the Dr decides to give him a tetanus vaccine. My husband thought nothing of it. 1 week later his crohn's symptoms returned and when we went to his GI we discovered the worms were GONE. We're pretty sure it was the vaccine.

We were then told by our hookworm provider that if we reinfected, the side effects would not be like the 1st time. He said they would be much lighter and would last 2 weeks max. He was generous enough to not charge us for re-inoculation. So we did it again. 25 all at once. This time he reacted even worse and after 1 month of utter hell (non stop vomiting & horrible pain), he went to the ER and terminated them.

I know of another crohnie doing hookworms and she has had similar experiences. I believe hers have died about 4 times. We don't know why in her case. Maintenance has been very hard for her though. She continues to use this form of treatment and is fighting to make it work for her. I hope she works it out.

That's just my experience with the worms. I know that TSO (whipworms) work differently. You drink them every month since that is their life cycle and there are no side effects. This might be the way to go to start off, although it may not be as effective as the hookworms for people with crohn's. It is also costlier in the long run.

Hope this helps.
 
I apologize for bumping an old thread; however, this was recently featured on Doctor Oz. They said that the people who had Crohn's/UC/IBS that did this therapy, went into complete remission. I find it absolutely incredible, and if my Crohn's ever got worse - I would gladly sign up for it.
 
Does anyone know how many people are using this therapy sucessfully for more then 3 years? How close are the researchers in the US to making this available or more trials in the US? If so to whom do we contact?
 
MaryAnn, I have done a lot of reading and research regarding this therapy because I'm thinking about trying it myself. Some people responded well while others did not. People tried also have been blogging about it. Very few people tried it for more than three years. It's unlikely this kind of therapy will become in the US anytime soon. I know there are two companies that offer this (none in the US). Just google helminthic therapy, you will find a lot information on it.
 
Dear Mr XXX Igor,

you will get first reaction between the 4th and the 6th bottle TSO, that means after 8 or 12 weeks so therefor it is absolut normal that you had no reaction after three days. you need 10 bottle for a complete therapy. Every second week you should drink one bottle.
We alsways send out without cooling them because the eggs will survive a few weeks without cooling them as long as you do not cook or freez them. We also send out for example to Australia and in this case the eggs are on tour for 4-5 days without cooling them and will alive. Please be patient.

Mit freundlichen Grüßen / Best regards

Morsal Haidari
Assistenz der Geschäftsleitung/
Assistent to Managing Director

OVAMED GmbH
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22885 Barsbüttel
Tel: +49 40 675 095 10
Fax: +49 40 675 095 59
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Igor - heard those TSOs are very very expensive, glad you got them in a clinic trial.
Our life is invaluable!

Basically in Ukraine we should buy everything for our cost .... remicade, humira, entorocort, pentasa, doctor visits and etc. we pay from our salary! We did not have developed insurance services and our government could not help because lack of many in the budget. So we mast work or died! Most of people ( about 80%) could buy only prednisolon made in Ukraine! I already sell my country house.... So this money help me to buy TSO and I will help me with other medicaments for some time!
If will be in remission on TSO, then I will moved to Germany!
 
gt91:

The therapy is very new so that's the main reason not a lot of people are > 3 years out. Some people can host these worms for awhile, like 7-15 years for a single batch (as numerous studies from Africa, etc have shown), where others will need much more frequent inoculations. It all depends on ones immune system. Mean time seems to be about 2.5-3 years I believe...it's about 1.5-2 per batch in me.

Some people eventually develop a tolerance to these worms (where the treatment is non-effective anymore). It seems to be related to the number of inoculations you've had. But that often times takes dosing of > 10-15 times (very uncommon except for the people that provide the worms). If that happens there are other worms that can be used, and research continues to find ones that offer the benefits but are more gentle than hookworm. TSO is a promising one, cost aside, but I recall seeing some reports that the frequent dosing never fully gives the immune system a chance to really settle down with the organisms.

The worst side effect of the worms for me (after the initial adjustment period) was how they liked to manipulate iron levels. For me, this meant I had to supplement with iron. This can be a problem if you have or have had issues like SIBO (which was a problem with me), as iron feeds those bacteria.

Robby
 
gt91:

The therapy is very new so that's the main reason not a lot of people are > 3 years out. Some people can host these worms for awhile, like 7-15 years for a single batch (as numerous studies from Africa, etc have shown), where others will need much more frequent inoculations. It all depends on ones immune system. Mean time seems to be about 2.5-3 years I believe...it's about 1.5-2 per batch in me.

Some people eventually develop a tolerance to these worms (where the treatment is non-effective anymore). It seems to be related to the number of inoculations you've had. But that often times takes dosing of > 10-15 times (very uncommon except for the people that provide the worms). If that happens there are other worms that can be used, and research continues to find ones that offer the benefits but are more gentle than hookworm. TSO is a promising one, cost aside, but I recall seeing some reports that the frequent dosing never fully gives the immune system a chance to really settle down with the organisms.

The worst side effect of the worms for me (after the initial adjustment period) was how they liked to manipulate iron levels. For me, this meant I had to supplement with iron. This can be a problem if you have or have had issues like SIBO (which was a problem with me), as iron feeds those bacteria.

Robby
hi Helminthic therapies !:)
 
These numbers are pretty remarkable. I have been waiting to pull the trigger and do this therapy for awhile now. Documented trials and cases are still fairly new, however with those success rates, its looking extremly tempting. Im contemplating making a trip to mexico early 2012 for these worms. It might be a wierd therapy option, but on paper the risk vs reward scale looks like a no brainer when you compare that of remicade, prednisone, 6mp, ect...
 
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