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Has anyone tried TSO (whipworm eggs)?

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Ulcerative Colitis
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Posted 6/29/2011 9:42 PM (GMT 0)
Hi Y'all!

I'm currently doing a course of TSO and was wondering if anyone else has taken them? What were your experiences and symptoms while on them? I'm trying to separate which of my symptoms are from the worms themselves or from UC.
Posted 6/29/2011 10:20 PM (GMT 0)
If you do a search, you will find some responses from people who are trying worms. Where did you get the worms? We have a user, NatWell, who got pig whipworm from Ovamed - she seemed to be having a good response ot them but I haven't seen her post in quite a while... AIT has an active yahoo group you could join. I believe their product is a human worm.
Posted 7/2/2011 2:04 AM (GMT 0)
Hi - I am going to try human whipworms from Autoimmune Therapies in the UK. I live in Boston and am going to make the trip to the UK to do this. Tried just about everything out there. How long have you been on them? And, where did you get them? I figure it's my last resort prior to surgery. Curious to know how you're doing. There is also discussions of this on the crohn's board.
Posted 7/3/2011 9:34 PM (GMT 0)
Hey Dietcoke--I've been flying to Boston to get my worms through a clinical trial Harvard is doing (not for TSO with UC, for TSO with peanut and tree nut allergies, which I also have). Before you fly to the UK, try to see if you can get into the efficacy study for UC. I'm pretty sure they're going to do it soon, but I'll see if I can get the information. If that doesn't work, you could just order them online from ovamed. They're the ones supplying my Harvard worms so I know they're legit.

I've gotten four doses so far and am about to get my fifth (I'm coming to Boston on Tuesday). My allergies are way better but I haven't seen much improvement in my UC. I've been bleeding and having loose stools the whole time. I'm still holding out hope I'll start feeling better as I get more worms, but I'll admit I'm discouraged. I was really hoping for the worms to be a miracle cure.
Posted 7/3/2011 10:09 PM (GMT 0)
Sicktree, I believe the TSO and the human worm are different and I have read that the human whipworm is more effective. AIT sells the human whipworm but does not shihp to the US. Ovamed only sells pig whipworm which can be helpful but from what I've read, it's not as helpful because the worms only live a couple of weeks where as a human worm lives much longer. Of course the risks with a human whipworm are much greater since a human is the donor.

I've heard the TSO can take many doses to work 8+. Please keep us updated on your progress.
Posted 7/6/2011 2:24 AM (GMT 0)
Ah, gotcha. Sorry, I didn't notice the word "human." I didn't even know they were offering human whipworm. Can't that spread to other people, though? I haven't heard much about human whipworm.
Posted 7/26/2011 9:52 AM (GMT 0)
it cannot spread to others as the eggs need incubation for a month before they are ready for injestion
Posted 7/26/2011 10:08 PM (GMT 0)
Hi, i have been trying to order TSO from the biomonde-asia website but continue to get a "SAFE MODE Restriction" warning/error that is causing my order not to go through. Do you first have to setup an account through ovamed.org before you are able to order? Our (my girlfriend is the patient) Dr here got the info from a Dr friend of his in NY, who has confirmed others are able to use the biomonde-asia website, but i've tried on multiple computers and get the same message. ideas anyone? thanks
Posted 9/13/2011 12:44 AM (GMT 0)
Go to Ovamed website, click order, then click the Thailand flag which takes you to biomonde website. You will then fill in the order page. It costs about $1,500 even though it appears that it will be cheaper because the dollar is weaker than the Euro. Hope this helps, it works for me every time and I have been using it for about 8 months now.
Posted 9/13/2011 3:09 AM (GMT 0)
I haven't. The treatment is expensive. However, if you can afford it, no reason not to give it a shot. It's highly, highly unlikely you'll have detrimental effects (occasionally people are allergic to them) and if it may help, why not?

As for it spreading...that's what hygeine is for. Wash your hands well and there shouldn't be any issues. The only way you can spread it is via the fecal-oral route.
Posted 2/19/2014 3:24 PM (GMT 0)
I took the TSO during a clinical study in 2003. It put me in complete remission from UC for 9 years! I had a major flare in 2012 and am on remicade, lialda, imuran, proctofoam, canasa...nothing seems to work like the TSO did for me.
Posted 2/19/2014 4:47 PM (GMT 0)
Hi Anna, can you do the worms again? Seems like you had a really good run!
B
Posted 1/8/2015 12:28 AM (GMT 0)
I just got done with another TSO trial. Started at 40cm of inflammation now at 20cm. Buying them from Tanawisa now. Feeling much better. Not on any meds now.
Posted 2/4/2015 12:14 AM (GMT 0)
@anna with uc

You have been getting TSO from Tanawisa? Can you elaborate on your experience? How is it going? I am considering buying from them, but there isn't a lot of info with regards to customers and quality and so on.

Can you please update us as to how things are going so we can use that to make decisions about buying from Tanawisa?

Thanks,
rakundig
Posted 6/18/2015 3:09 PM (GMT 0)
I have had 2 doses from Tanawisa and just ordered 3 more. I have seen no improvement yet, but after reading on these forums, I see it took other people a long time to get results, so I am going to try a few more times. The stuff is very expensive...5 times more costly than my expensive monthly co-pay for Lialda.
Posted 6/18/2015 3:35 PM (GMT 0)
From what I remember the results have been mixed. We have had a few people who tried them without result for sure. I think a couple went on to have surgery even. Definitely feel like i've seen more without results than with but that's just how message boards go.
Posted 6/18/2015 7:26 PM (GMT 0)
I just can't wrap my head around this treatment, even though it has had some successes. It's not really the ick factor but I can't help wondering that fixing one medical problem by introducing aliens into our systems that aren't supposed to be there, is the answer. Maybe for some it is.
Posted 6/19/2015 12:02 PM (GMT 0)
When I first heard about them I thought fecal transplants sounded even worse (yeech!). But apparently FTs turned out to be a very effective therapy, especially for C Diff.
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