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Crohn's Disease Forum » Support Forum » How to get involved in worm therapy


02-15-2013, 07:21 PM   #1
gailk
 
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How to get involved in worm therapy

Hi everyone,
My 20-year-old son has been recently diagnosed with Crohns Disease and we're wondering if someone knows how to get him involved in the promising worm therapy that we've read and heard about. We're in Ann Arbor, Mich. His GI doctor at the University of Michigan is very anti-anything that's not traditional medicine, we are about to change doctors.

Many thanks!
02-15-2013, 08:28 PM   #2
Ihurt
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Hi there,

Are you talking about the worm therapy where a person swallows the worm and it is suppose to eat away certain bacterias in the gut and enhance healing? I thought I read something about it awhile back. I do not know much about it. Maybe soeone else on here does.

Yeah, you are not going to find any western med doctors who do things naturally. They are all about drugs in terms of treatment. I think if a person can do it naturally, the better off that person is going to be. I think it is different for eah person, what works for one may not work for the next and vice versa. Anyhow, hope you can hook up with a good doctor who is open minded that can help treat your son.
02-15-2013, 08:36 PM   #3
xmdmom
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My understanding is that some people use pig whip worms and others have tried hookworm. There are some ongoing clinical trials of whip worm for Crohn's: http://clinicaltrials.gov/ct2/result...&Search=Search

Take a look here: http://www.crohnsforum.com/wiki/Helm...kworm-Whipworm

and here for starters: http://www.crohnsforum.com/showthrea...594#post596594
02-15-2013, 09:32 PM   #4
Gra
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Are you talking about the worm therapy where a person swallows the worm and it is suppose to eat away certain bacterias in the gut and enhance healing? I thought I read something about it awhile back. I do not know much about it.
My understanding is that you don't swallow the worms, they simply put a patch on your arm which has some with worm eggs on it.

The worms hatch, burrow into your skin and then enter your body through the bloodstream in the normal way. Also the worms don't eat bacteria, but instead are used to stimulate your system and its defences.

See http://www.crohnsforum.com/wiki/Helm...kworm-Whipworm
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ABOUT: male, 66 yo, DX CD Terminal Ileum, 1-May-2012
MEDS-PREVIOUS: Prednisone: 6 months, stopped 19 Dec 2012. Imuran: bad reaction.
Humira: 5th Oct 2012 till July 2013. Worked well for me.
SURGERY: 6 Aug 2013: Ileostomy, Temporary stoma.
29 Oct 2013: takedown.
23 Jan 2015: in remission - my goal is to stay there.

"What doesn't kill us, makes us stronger!"
02-15-2013, 11:49 PM   #5
gailk
 
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Thanks for the leads! I really appreciate it and will share the info with my son.
02-16-2013, 02:29 PM   #6
Jennifer
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Worm therapy was suggested to me over 15 years ago by my GI. Its still in the trial stage. I haven't heard much about it ever since and don't know anyone who's tried it. I didn't do it due to the possibility of the worms becoming adults and perforating your bowel which is mentioned in the link above to the forum's wiki on worm therapy. Let us know if he tries is out and how he does.
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
02-16-2013, 04:15 PM   #7
kiny
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I have only read a few studies about it, none related to crohn's disease. It's not because it eats other bacteria or because it helps the immune system that it works.

Once they infect people the hookworm become a primary antigen and will invoke a strong response, what happens after that I don't really know fully. It has a strategy to survive since it stays alive in people for long periods, it's modulating the immune response and causing apoptosis of T cells, both killer and helper cells I believe.

What I don't think it's doing at all is "boosting" or helping the immune system, that would be lovely, if it was actually increasing lymphocyte response you'd give it to aids patients, that doesn't happen. It's a type of bacteria that is an immunomodulator and that's how it tries to survive, if anything it's doing the opposite instead of helping the immune system, it actively targets lymphocyte.

In fact, regarding HIV, they actually are testing how hookworms work and their effects on people to study how the HIV virus works, because hookworms manage to deplete the T cell response, I think the last thing you would give an HIV+ person is a hookworm, it doesn't help the immune system it's a type of immunosupressor and it's depletion of T cell is how it's surviving, and to me that's how I think some people with crohn's disease feel better, since it's actively surppressing the inflammation by suppression of T cells. If it was helping T cells in any way you'd give buckets of it to AIDS patients or people with PID, no one is using this for PID diseases.

In Africa people with HIV get infected with these hookworms, it makes the viral infection worse not better.

Last edited by kiny; 02-16-2013 at 04:33 PM.
02-16-2013, 07:42 PM   #8
xmdmom
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Here is some info on how worms are thought to work from a recent article entitled "Autoimmunity: The worm returns" by Joel V. Weinstock published in Nature 491, 183–185 (08 November 2012) doi:10.1038/491183a

"How it works.
Worms seem to have three major effects on the immune system ... First, they seem to cause changes that activate regulatory T cells such as Treg. These cells dampen immune responses and curb autoimmunity — by, for example, ramping up the production of regulatory molecules such as interleukin-10 and transforming growth factor-β. Second, helminths seem to act on other cells regulatory dendritic cells and macrophages. These prevent the switching on of dangerous effector T cells, which normally leads to inflammation and disease. ....Third worms seem to alter the bacterial composition of intestinal flora. Research in mice suggests that helminths promote the growth of gut microorganisms typically considered to be ‘probiotic’, which help to maintain intestinal health."
02-24-2013, 06:16 PM   #9
gailk
 
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Thanks for all the replies. Currently, my son is in remission and still on Entocort. Trying to avoid going on Imuran due to all the side effects. Not sure if he'll decide on worm therapy or not, it's a fear of his big time. I wonder if it's true that worms can rarely become adults?

He's trying some changes in diet, supplements, lifestyle changes for now that seem to be helping a lot. I'll post separately questions and what's helped him so far along these lines.
03-27-2014, 09:56 PM   #10
Eli_d
 
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Hi everyone, I realize that this is an old thread but I've recently been diagnozed with UC and just ran accross the "worm therapy" so I had to do some more research. Wikipedia is always a good start. Since I'm a new member I can't post links yet so just search for "Helminths Therapy" there.
This paragraph is pretty convincing: "...helminths have shaped the evolution of at least parts of the human immune system, especially the genes responsible for Crohn's disease, ulcerative colitis, and celiac disease — and provides further evidence that it is the absence of parasites, and in particular helminths, that has likely caused a substantial portion of the increase in incidence of diseases of immune dysregulation and inflammation in industrialized countries in the last century."


And while there search for Helminths - it shows how Helminths are bad for our health. So it's a catch 22 in a way. Damned if you do and damned if you don't.

Please let us know if your son tried and what the results were.
03-28-2014, 12:39 PM   #11
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My mind works on multiple levels... first I think... my opinion of Wikipedia is lower than a worm's belly.... then I think... well tons of stuff is investigated and abandoned for many reasons, mostly marketing reasons (worms? ewww...). Finally, I keep wondering why people don't just volunteer for a mission in a remote country for a few months and get infected naturally with helminthes? Well, maybe they're not religious. But they could raise pigs.

What I've read about this is that having repeated infections shortens your life overall, but it makes your immune system work much better. So people with worse sanitation than us actually have much better immune systems (adapted to their environment of course... smallpox will still wipe them out because it's foreign).

The place to start with helminthic therapy is the FDA if you want it in the USA (at least, legally and through a doctor's office)... this person seems to sit on the correct board and can at least speak about the status of it:

http://www.fda.gov/downloads/Advisor.../UCM289817.pdf

Search his CV for helminth and you'll find the advisory board I'm talking about. Hopefully that will give you a lead to find some answers.

You can always google with "site:fda.gov" to find something like that CV in the future. I love google hacking!
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