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Crohn's Disease Forum » Treatment » Any New Zealanders trying Helminth Therapy?


10-30-2010, 04:28 AM   #1
cowgirlnz
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Any New Zealanders trying Helminth Therapy?

Interested to hear from any New Zealanders who have tried Helminth Therapy - hook worms, whip worms etc?? Not even sure if it's legal here.
And in general keen to hear of anyones experiences, good or bad, with this therapy.
04-08-2015, 07:21 AM   #2
BM055
 
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Did you try this cowgirlnz? I'm also in nz and thinking of giving this a try since no other treatments seem to be working for me. Some of the results for helminth therapy look pretty promising
04-08-2015, 12:02 PM   #3
24601
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Have you talked to your GP about trying this? I'm in the UK and gave information on the treatment to my GP and she was happy for me to go ahead and to oversee the treatment.

I did it for about six months but was also on EEN most of the time (in large part for strictures) and can't really say whether it worked for me or not - I was just prepared to do anything I could safely do at that point and didn't get any help from my GI.

I bough the whipworms from Ovamed - a German company that ships internationally. It is expensive but I felt as confident as I could in the company and I experienced no side effects.

Let us know how you go.
04-09-2015, 05:12 AM   #4
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Good idea - will talk to my GP about this. Am 100% sure my GI will be unsupportive as he's very conservative. But my GP is pretty open minded so maybe she will be willing supervise the procedure.

I'm also currently trying EEN (E028) and have been on it for 8 weeks so far but have not improved so far unfortunately.

Have you improved on the whipworms though 24601? Would you recommend this treatment?

As all meds have failed me so far and my CD is steroid resistant I'm looking at a full colectomy unfortunately so am keen to try all alternatives. Am also looking at giving FMT a go.
04-09-2015, 10:40 AM   #5
24601
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Well, the thing is that I feel like I can't say for sure if the whipworms made a difference. I took them for roughly 3-4 months and then needed surgery for strictures. I didn't have a lot of help from my GI at all and so didn't have the kind of monitoring that I feel would have been necessary to judge - and I couldn't really judge based on symptoms as they were mainly from the strictures.

I think my answer would be a not very helpful and rather equivocal "maybe". They certainly did no harm but I know that when so much is at stake in terms of your health it would be so much better to hear something more than that.

I have fairly diffuse inflammation throughout my jejunum and ileum so it can be difficult to monitor disease activity in that we never really get pictures - or at least not what the actual bowel looks like (I have had lots of strictures so no pill cam!!!). We also had only ever done barium follow throughs before I did the whipworm treatment so all the information we were ever really getting was about the location of narrowings. Now using MRIs we can at least know a bit about inflammation too.

I also never had very high inflammatory markers in my bloods (and now don't seem to respond in that way at all!) and it was 2004/5 so only the beginning of fecal calpro testing - I think I did one sample but at that time you'd send it to the lab and they wouldn't do it for months!

So I'm definitely short of useful information - and I really wish I had more useful measures of my response for others to read about but also for me too!

Right now I'm on Humira and methotrexate and they help to a degree. But my doctors think they don't do enough and I'm actually going to start treatment for a stem cell transplant at the end of the month. I don't know if that's an option for you or if you would consider the risks/benefit ratio to not be worth it. Feelings about living with a stoma are so individual but I know that many people on the forum here are happy about their decision to have that surgery.

Have you tried any of the newer biologics? Entyvio/vedolizumab or Cimzia, perhaps?

Really sorry to hear that an 8 week course of EEN hasn't brought an improvement

Have you tried anti-MAP antibiotic therapy?
04-13-2015, 03:52 PM   #6
wellen1981
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I have noticed quite a few people discussing helminth therapy online but what does surprise me is that none of the things i read pointed to anything sourcewise to back up the reasoning behind trying it.

Would find it very interesting to hear how people ended up considering it whether it was just on the basis of others doing it, or is there some seriously credible research online somewhere to show evidence of positive results.

I'm not for or against the therapy but I would like to read data on its outcomes in regards to IBD and any other condition to be honest.

I noticed on reddit quite a few americans who went for this therapy were having to order overseas and it was UK companies they were dealing with...
04-13-2015, 05:16 PM   #7
24601
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Papers:
http://www.ncbi.nlm.nih.gov/pubmed/24442917
http://www.ncbi.nlm.nih.gov/pubmed/15591509
http://www.ncbi.nlm.nih.gov/pubmed/14499784

The 2003 and 2005 studies are what I based my decision to try it on
04-13-2015, 06:05 PM   #8
wellen1981
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Thanks.

I just wish I was well enough to spend more time living rather than actually being ill and reading all this stuff.
Every week I am finding more reasons to sit on pubmed and that domain you linked reading articles.

Right now I'm reading The Hippocratic Corpus...
http://www.ucl.ac.uk/~ucgajpd/medici...a_hippint.html

easy links to the Corpus are here
https://ebooks.adelaide.edu.au/h/hippocrates/

of interest is this
https://ebooks.adelaide.edu.au/h/hip...lae/index.html
(check out point 6!)
(woah point 12 talks about having pain without inflammation... and speaks of poultices!)

and this
https://ebooks.adelaide.edu.au/h/hip...ers/index.html
(check out near end of point 1 eg last quarter regarding of the gut/stomach)

and yes, we are talking 450bc-ish Greek Medicine.

I'm not even

Last edited by wellen1981; 04-13-2015 at 06:24 PM.
04-13-2015, 06:18 PM   #9
24601
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I understand!!! The day we get well is (probably) the day we stop reading all this stuff! I say bring on the cure

Not to get too far off topic but any luck with trying the anti-MAP therapy? I don't see why you shouldn't get a referral to Guy's and St Thomas' for a one off appointment to at least discuss it if you can't find a GI closer who'll agree to treat you. Maybe your GP could even oversee the treatment largely and as far as your GI is concerned treatment is going on as normal - I mean I would tell them but otherwise just let them do their thing with monitoring you. Or have you decided against?
04-13-2015, 06:32 PM   #10
wellen1981
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I understand!!! The day we get well is (probably) the day we stop reading all this stuff! I say bring on the cure

Not to get too far off topic but any luck with trying the anti-MAP therapy? I don't see why you shouldn't get a referral to Guy's and St Thomas' for a one off appointment to at least discuss it if you can't find a GI closer who'll agree to treat you. Maybe your GP could even oversee the treatment largely and as far as your GI is concerned treatment is going on as normal - I mean I would tell them but otherwise just let them do their thing with monitoring you. Or have you decided against?
I'm still on the fence regarding anti-MAP (mainly just trying to do my last effort on research before commiting to it - to be honest i'm wanting to do it but just looking for anymore reasons to not do it) plus right now I am 3 weeks after colonosc and MRI and my GI and hospital is that bad that they havent even contacted me regarding results or another outpatient appointment either. I got online access to the hospital website 2 weeks ago and from there i can access medical letters for me but stupidly they dont put all of a patients data on it, so i have no access to my bloodwork, procedure data or results.

I am hoping to see my results go up or on Weds i will be ringing to chase them as i have had to always do - talk about not giving a damn about patients.

I honestly hate this hospital, they just keep dropping the ball and dont seem to give a damn.

And another curve ball is I may be moving soon to another county entirely so that will work against me while being ill.

I'm just finishing reading this Corpus then I will see the links you sent me.
04-13-2015, 08:06 PM   #11
wellen1981
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ok so far so good....

Latest paper 2014
Seems to demonstrate through very low percentages, the inability to make a serious dent in the symptoms of both people with UC and CD IBDs.
The thing to appreciate with this study though is that if indeed this does work on the Th2/Th1 immune response(s), the therapy is still only relevant for manipulating the immune response of the body (without me going off and reading up on Tn1 and Tn2 immune responses I am just assuming that they are like tiers and Tn1 is lower tier than Tn2 so once a Tn2 'threat' is found the Tn1 response gets 'put on hold' while the Tn2 immunity response 'kicks in' - I will leave my assumption here and come back and clarify once i do find out). Again, a therapy treating symptoms rather than targetting disease (although I guess you could argue that it is in fact targetting a cause of a symptom).
ok did a quick read Tn1 and Tn2 are pain or nerve responses i believe...?

2005 paper
This paper interests me as I have CD rather than UC. As soon as iIstart reading though iIwonder the wisdom in ingesting said worms though...
Does it matter if they are entering through this method eg how do they fare when entering the stomach with bile/acid - is it not better for the worm eggs to be administered through the arm I wonder. Also this CDAI makes me wonder - how relevant is this index with understanding of the diseases/conditions improving year on year - surely as each year passes the newly gained understanding renders the CDAI less relevant and more redundant?

I wish someone had done my CDAI:
-at the peak of flares just before I drastically changed my diet
-again once my pain disappeared a week into altering my diet
-after my recent colosc which showed my ulcers and inflammation had gone

Cant argue with the data of this 2005 study though, the index was >220 and after helminth therapy 79% (23 out of 29) of the patients had reduced index by 100. Putting that in words if you asked most of us would we like half the pain without the meds I think all would have said 'YES!'.

2003 paper
I will go easy on this one as it is the earliest study...
Very small group of test subjects, of note to me was 4 CD patients and 3 of 4 (75%) after therapy, according to the CDAI went into 'remission' with the 4th only just outside of remission according to the CDAI
The only other thing I found of note is the last part regarding speculation that repeated procedure every 3 weeks would likely be needed to maintain the effect.

Hopefully I wasnt too critical and the bits I picked out were worth it.
04-13-2015, 08:20 PM   #12
24601
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Yep, absolutely. In 2004/5 it seemed promising but the results have been nothing like that first small scale study. At least it did no harm.

See also:
http://www.medpagetoday.com/Gastroen...lDisease/42805

And someone's university dissertation on it here
http://commons.pacificu.edu/cgi/view...491&context=pa

This title of this 'nature' article from 2013 seems surprising but I can't read the whole article to know what they actually say! I feel like it was a bit belated since the interest seemed to be over for treating Crohn's by then at least.

There is an ongoing study for UC though it seems:
https://clinicaltrials.gov/ct2/show/NCT01433471
04-13-2015, 08:22 PM   #13
wellen1981
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Yep, absolutely. In 2004/5 it seemed promising but the results have been nothing like that first small scale study. At least it did no harm.

See also:
http://www.medpagetoday.com/Gastroen...lDisease/42805

And someone's university dissertation on it here
http://commons.pacificu.edu/cgi/view...491&context=pa

This title of this 'nature' article from 2013 seems surprising but I can't read the whole article to know what they actually say! I feel like it was a bit belated since the interest seemed to be over for treating Crohn's by then at least.

There is an ongoing study for UC though it seems:
https://clinicaltrials.gov/ct2/show/NCT01433471
i will check these other links of your out tomorrow.

My closing impression of helminth therapy though is that if i was still in constant every day terrible pain, i would sooner take worms than meds. For me though altering my diet drastically got rid of the pain but if i was to eat normally still and the worms got the CDAI index down as well - i would be up for it.

Though that still leaves us without treating the actual causal infection mind...

Last edited by wellen1981; 04-13-2015 at 09:25 PM.
04-14-2015, 08:40 PM   #14
BM055
 
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24601, thanks for your response and links, very interesting and useful.

Very interested to hear about newer biologics - had no idea about them at all! I wonder if they are provided for under the health system here in NZ. Will follow up with my GI. Although I've been resistant to Humira and Infliximab so possibly it would be the same situation here.

Am also going to look at anti-MAP treatment, it looks like an effective treatment for some people. None of the Doctors I've spoken to seem to know about it but it looks like Thomas Borody in Australia is willing to guide GPs through the administration of the treatment. I assume that you have tried this?

Fascinated to hear about stem cell treatment for Crohn's. It looks like a very serious procedure but quite incredible too. I really hope it is effective for you. It's definitely something I would consider but I have to admit that it looks a bit daunting to me.

I'm lucky I think in that at the moment at least my CD is confined to my Sigmoid colon and rectum and so a stoma would probably be a good option for me. Initially I was very reluctant but these days I'm not so worried about it. I just want to be sure I've covered all other reasonable options before I do anything irreversable.

Am continuing with EEN for another 4 weeks to make sure but not optimistic :/

Saw a new GI this week and he suggested Thioguanine, related to Azathioprine (which I had a bad reaction to). Fingers crossed that it is effective for me but I will definitely be trying FMT, Helminth therapy (thanks again for your experience and research), and anti-MAP treatments if not. Also will look into these biologics so thanks for the tip.

Good luck for the stem cell treatment.
04-14-2015, 11:50 PM   #15
Layla
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Hi BM055,
Have you discussed FMT with your GI? I'm also in NZ(Welly) and I haven't heard of anyone doing it here. As the Humira is not doing what it used to I'm very interested in this therapy and it's on my list to ask next time I see him.
I'd be keen to hear how your GI feels about trying it.
04-15-2015, 02:09 AM   #16
BM055
 
Join Date: Feb 2015
Location: Auckland, New Zealand
Hi Layla

Every GI (3 in Auckland) I've brought it up with has been pretty reserved - no-one seems keen to administer this treatment for CD.

Am hoping my GP will supervise the procedure but if not then I'll try it out at home, will be safe as possible, screen donor thoroughly and inform Docs of what I'm doing in case anything goes wrong. But I've read that it can be self-administered effectively: (http://mishap.sdf.org/meds/Success_o...0Infection.pdf) and that FMT is relatively safe for immunocompromised patients (http://www.medscape.com/viewarticle/828713).

So yeah.

Would be interested to hear what your GI says
04-15-2015, 02:28 AM   #17
Layla
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I haven't got an appointment yet, but I'll let you know how it goes. I chose this one for being younger and more modern, we'll see...

Thanks for the links
04-15-2015, 06:00 PM   #18
24601
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Hi BM055

As I understand it, some people don't respond to the anti-TNF-alpha biologics because in a minority of patients an extra high TNF-alpha level isn't their issue. If you're one of those who never responded (rather than losing response or not having an adequate response) then Entyvio/vedolizumab would probably be the one to try since it works a bit differently. That just became available in the UK in Feb this year and I believe they are still waiting a few more months in Canada - sorry I haven't heard from anyone in NZ who's started or who's waiting on this.

I have tried (or I feel it would be more accurate to say attempted to try!) anti-MAP antibiotic therapy but unfortunately I couldn't tolerate the antibiotics :/

Had to do that before going for the stem cell transplant option as it is a bit of an ordeal, and bearing in mind the main risk factor of the 2% mortality rate. But it does seem to open up treatment options for almost all patients post-transplant and result in disease being much more sensitive to treatment. Fingers crossed! Thanks for the well wishes!

I hear you on feeling like you need to know that you've tried all you can before making a big decision like surgery - but equally understand that it could be a really positive decision for you.

I just wondered have you tried methotrexate? I had bad reactions to aza and 6mp but no probs with methotrexate and it does seem to help my inflammation levels somewhat.

Good luck with pursuing anti-MAP and FMT and/or any other route you decide to go!
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