Treating crohn's with hookworm

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

H

hookworm host

Joined
Sep 23, 2010
Messages
5
treating crohn's with hookworm

Hi. I have had crohn's in my small bowel for over 20 years. I've had all sorts of drugs, 2 operations and am currently on methotrexate. Whilst effective in treating the crohn's, methotrexate leaves me listless and nauseous for about 36 hours per week. I've had enough so have just embarked on helminth therapy, specifically hookworm.
 
Cool. Let us know how it's going. That's some interesting stuff. Boosts your immune system response, right?
 
welcome hookwarm to our forum. We will be very interested to read about your journey with the hookworm
 
Hi Hookworm and :welcome:

Oooh, thanks for posting hookworm. I will follow your journey with interest!

:goodluck::goodluck::goodluck:

All the best, :)
Dusty
 
Welcome to the forum!
I've been researching a little into helminthic therapy so I'm looking forward to following along with you on your journey. Best of luck with everything and keep us posted :D
 
:welcome: Hookworm.

Glad you have found this forum, I have read about this therapy and I'm very interested in following your journey.

:goodluck::goodluck:
:thumleft:
 
OK. I'll try and post updates here, although they say it will take 4 months to take effect so I'm not sure folk will remain interested that long?
I'm currently in remission, using 25mg IV methotrexate. The reason I'm starting the helminth therapy is because the methotrexate leaves me feeling nauseous and listless for 36 hours a week. Better than Crohn's obviously, but I'm still fed up with it.
So the plan is to gradually reduce methotrexate after 4 months of hosting the hookworm, and after 6 months increase the hookworm numbers to 70 (I have started with 35). Important to note that this is hookworm (Necator Americanus) and not other forms of helminth therapy (e.g. TSO) which I would expect to have far less success with, given that the disease is in my small bowel. The other attraction of hookworm is that they are estimated to have a life of 3-5 years. Providing they do last that long, it should keep the costs from becoming too prohibitive.
Early days...
 
hi & welcome to the forum!

this is one of those treatments where many of us wouldn't be brave enough to embark on, so well done you for having the guts (no pun intended lol) to do this. please keep us updated with your progress, and good luck!
 
Hi Dingbat. Thanks for the good wishes.
I certainly don't feel brave though, except perhaps in spending £2,000 on a relatively experimental treatment. In terms of the risks however, they seem minimal to me. Millions of people, mostly in the developing world, have hookworm and official medical advice is not to treat mild infections as it causes no problems. Mine will only ever be a mild infection because the numbers I innoculate myself with are strictly controlled and can't reproduce in the body. Administering the innoculation requires no bravery either - I simply apply a patch to my arm, which results in an itch for a few hours.
People react to the word 'worm' I guess but these things are microscopic organisms. I like to think of it as an advanced form of probiotics.
 
it is so interesting to actually have someone doing this treatment on our forum - and educational too - for instance, i didn't realise they were administered via a skin patch, i always assumed they were taken orally!

so, in view of them obviously going into your bloodstream via the patch, i would think that they could treat Crohn's anywhere in the body, not just in the ileum for instance.

and i agree, thinking of them as akin to gut flora is probably a pretty good analogy. it's also reassuring to read that you have total control over how many are in your body, and that they can't reproduce.

i presume that when your treatment is finished, you can take medication to eradicate them from your system?
 
hookworm host said:
In terms of the risks however, they seem minimal to me. Millions of people, mostly in the developing world, have hookworm and official medical advice is not to treat mild infections as it causes no problems. I simply apply a patch to my arm, which results in an itch for a few hours.
People react to the word 'worm' I guess but these things are microscopic organisms. I like to think of it as an advanced form of probiotics.
Click to expand...

Thanks Hook, I'm already learning things I didn't know!!!

But you'd be better off starting a new thread in the Treatment section. Also, I don't know if Rebecca has started one, but a Hookworm entry in the Forum Wiki would be useful for factual type info as well.

Hey Hook, I started a Wiki article titled Helminthic Therapy. Now it just needs someone to add the research...I'm too lazy for that :).
 
Last edited:
Hi Dingbat. They don't live in the bloodstream but make their way (no idea how?) from your skin to your small intestine, where they attach to the inside of your gut. So hookworm are good for small bowel disease. Other helminths, e.g. whipworm, are better for large bowel disease, as far as I understand it.
My treatment hopefully won't ever finish. The hope is that the worms will keep me in remission for life. If, at any point, I do need to get rid of them for some reason, then yes they can be eradicated very easily with a single dose of a drug whose name I can't recall right now.
 
This is so interesting! I look forward to following your blog. Please do continue to keep us updated here. Oh, and welcome to the forum! :)

I looked at your blog and also at the link for the company that provided the hookworms. On their site, it indicates that they can ship them anywhere outside of the US and Mexico. I wonder why that is? I know it's experimental, but are they totally illegal here or something like that? Anybody know?
 
Dexky said:
Thanks Hook, I'm already learning things I didn't know!!!

But you'd be better off starting a new thread in the Treatment section. Also, I don't know if Rebecca has started one, but a Hookworm entry in the Forum Wiki would be useful for factual type info as well.

Hey Hook, I started a Wiki article titled Helminthic Therapy. Now it just needs someone to add the research...I'm too lazy for that :).
Click to expand...

I guess that someone would be me?? Will need to get my laptop out so maybe a couple of days but I will get on it!

Welcome to the forum, hook!
 
Yes, I'm a geek. My secret is out! and I don't think newbies can do wiki entries, so we'll have to hope he hangs around long enough to be able to do it!
 
Welcome wormy...I mean HOOk..lol

Interesting stuff...hope you stick around and share your experience with the forum...the folks here value those that step into the experimental realm and help advance treatment options for the rest of us...good luck!

Jerry
 
helminthic therapy

You don't need to be an adult to try this treatment. In the developing world people get infected as soon as they are able to walk, so I think that would be the threshold at which I would draw the line.
The reason why you can't get it in the USA is because of FDA. They don't allow the sale of unlicensed medications in the country and the person who sells them already ran into trouble with them which is why he left the country and had to go to the UK.

I will never get rid of my hookworms and whipworms - they don't cause any ill side effects and they keep me in remission from severe Crohn's, food allergies and seasonal allergies. If I were to decide to get rid of them, a single dose of albendazole would do the trick.

Hookworms and whipworms are not gross at all - they are invisible in their infective stage, so there is no "yuck" factor. Put away your prejudice - you know that you have billions of bacteria in your gut and if they were to die, you wouldn't survive very long either. Same with these microscopic organisms, they keep you free of disease - we evolved with them for millions of years and the reason for all these auto-immune diseases is because we got rid of them completely. True, in large numbers they cause disease, just like anything unbalanced or taken to the extreme, but in small numbers they modulate our immune system to keep us healthy.

I am working on a wiki site where I collect all the current research on helminthic therapy. The "Links" section has links to a lot of blogs of people who are trying this therapy. A lot of them are in remission already.

I've been reading it for the last 3 years but only decided to go for it this year. I am sorry I waited this long - could've avoided unnecessary hospitalizations. If you have any questions about this treatment, I'll be glad to answer it (I read all the research studies I posted on the "Studies" section of the Wiki).


marcus said:
Hello hookworm host, i have a few questions if you don't mind, my understanding is you need to go to Mexico to get the helminthic therapy is this correct, also would my brother being fifteen in november be old enough to have this or do you need to be an adult. have you actually had the helminthic therapy or are you doing it soon, if done how long did the process take from first contact and how did you find dealing with the people who provide the helminthic therapy.
Click to expand...
 
Here's how they get to the small intestine from the blood:

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 . Most adult worms are eliminated in 1 to 2 years, but the longevity may reach several years.


hookworm host said:
Hi Dingbat. They don't live in the bloodstream but make their way (no idea how?) from your skin to your small intestine, where they attach to the inside of your gut. So hookworm are good for small bowel disease. Other helminths, e.g. whipworm, are better for large bowel disease, as far as I understand it.
My treatment hopefully won't ever finish. The hope is that the worms will keep me in remission for life. If, at any point, I do need to get rid of them for some reason, then yes they can be eradicated very easily with a single dose of a drug whose name I can't recall right now.
Click to expand...
 
HelminthicTherapy said:
I will never get rid of my hookworms and whipworms - they don't cause any ill side effects and they keep me in remission from severe Crohn's, food allergies and seasonal allergies. If I were to decide to get rid of them, a single dose of albendazole would do the trick.
Click to expand...

Are you sure a single dose would do the trick?
 
HelminthicTherapy said:
Here's how they get to the small intestine from the blood:

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 . Most adult worms are eliminated in 1 to 2 years, but the longevity may reach several years.
Click to expand...

Hi HT, I hope you don't mind but I added this info to our Wiki...with all due credit of course!!

I don't know how many posts you need to be able to edit the Wiki but if you'd go to games and play some of the word games you could build up enough very quickly. I'd like to see your research on the Wiki!! It really is a fascinating theory....
 
marcus said:
Hello hookworm host, i have a few questions if you don't mind, my understanding is you need to go to Mexico to get the helminthic therapy is this correct, also would my brother being fifteen in november be old enough to have this or do you need to be an adult. have you actually had the helminthic therapy or are you doing it soon, if done how long did the process take from first contact and how did you find dealing with the people who provide the helminthic therapy.
Click to expand...

Hi Marcus

There's no need to travel to Mexico. AIT (and other companies too I think) can ship to anywhere except the USA (because the Federal Drug Administration classified the treatment as a drug, thereby necessitating millions of dollars worth of trials, approvals etc before it can be sold there). I'm based in England like you and had no trouble getting it from AIT. The age issue isn't a problem either, as far as I know. The folk at AIT are really helpful and professional in my experience, but also extremely busy so sometimes can be a little slow in responding to emails etc. You have to go through an assessment over the phone with them, send blood results etc but it doesn't take long at all - a matter of weeks. And actually administering the hookworm takes about 5 minutes - see www dot hookworm4crohns dot blogspot dot com
 
hookworm host said:
Hi Dingbat. They don't live in the bloodstream but make their way (no idea how?) from your skin to your small intestine, where they attach to the inside of your gut.
Click to expand...

My understanding is that they travel via your blood stream to the lungs, from where they get coughed up, some may be expelled but some will find thier way down the throat and into the gut. There is an interesting video explaining it here:

http://www.abc.net.au/catalyst/stories/2823795.htm

Gra
PS - Hookworm Host - any updates?
 

Similar threads

R
Nearly 4.5 years in with Crohn's.
Replies
2
Views
1K
ras96mg
R
valleysangel92
Hello Old Friends
Replies
1
Views
557
my little penguin
my little penguin
Crohn2357
Rectal Tacrolimus for Strictures Due to Crohn’s
Replies
0
Views
620
Crohn2357
Crohn2357
Soryan
PARADIGM SHIFT NEEDED!!!
Replies
1
Views
1K
kiny
kiny
P
How long on EEN before your child had solid motions again
Replies
5
Views
791
padrach3
P

Latest posts

Back
Top