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Worm therapy, anyone? Or LDN?

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Ulcerative Colitis
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Posted 9/7/2008 5:35 PM (GMT 0)
Just curious if anyone on here has tried helminthic therapy. Saw an article in the New York Times a couple of months ago, and it has lingered in my mind since. I wouldn't mind swallowing a dose of worms now and then if it meant remission! Though I have no idea what you have to do to get this sort of therapy, and it seems to be expensive/not covered by insurance.

Also, low-dose naltrexone -- has anyone had experience with this? The last post I found in the archives was a couple of years old.
Posted 9/7/2008 5:42 PM (GMT 0)
I haven't read anything about this helminthic therapy. Will have to look it up, but I can't imagine swallowing worms! This is too interesting.

Hope your having a great day Emory! Mines better than yesterday!

Gigi1227
Posted 9/7/2008 5:51 PM (GMT 0)
Mine's better, too -- thanks, Gigi, and enjoy the rest of your day!
emory
Posted 9/7/2008 6:45 PM (GMT 0)

Well, you're technically swallowing worm eggs. :-) A GI I saw said that he has a couple patients on worms, but it hasn't been long enough to come to a conclusion. He gave me a name of a company in Europe that makes the pills, but it's a bit pricey. If I can't wean off of Remicade, I wouldn't mind trying the worm eggs.

There was a poster (JerryGarcia) who started LDN a couple months ago, but I don't think he's posted recently.  https://www.healingwell.com/community/default.aspx?f=38&m=1185172

Posted 9/7/2008 7:59 PM (GMT 0)
There have also been several previous discussions of the worm therapy. If you do a search, you may be able to find them.
Posted 9/8/2008 12:48 AM (GMT 0)
Hi, i have been taking the worm therapy for almost 1 year. I haven't really had any improvement, but the doctor said it was a long term medicine that could take up to two years.
Posted 9/8/2008 12:53 AM (GMT 0)
I think there was someone from the CD forum who was trying this and was posting her progress on a website...but it was a while ago?
Posted 9/8/2008 1:01 AM (GMT 0)
Forgot to say that when taking this around the time for your next dose you will have to go to the bathroom alot and get alot of gas because the worm is on its way out
Posted 9/8/2008 3:11 AM (GMT 0)
Thanks, kazzaz --

Can you tell me whether your insurance covers the treatment, and how much it costs? Also, is this something your GI offers? Do you mind telling me roughly where you live?

emory
Posted 9/8/2008 3:21 AM (GMT 0)
Pretty sure insurance doesn't cover it because its not approved in America yet (you have to order from Europe). It costs 700 dollars every 6 weeks. My GI didnt really recommend it because non of her patients had tried it yet, and i live in Texas.
Posted 9/8/2008 12:51 PM (GMT 0)
Hey, I have been taking LDN for about 8 weeks now and am back to how I was pre-diagnosis. I take about 4.5-5.5 mg a night (I'm not amazingly accurate) and am currently eating whatever I like, drinking whatever I like and feeling great.

I am going once a day (fully formed) unless I have two big meals in the same day, in which case I might go in the evening as well, but this is normal even for people without UC.

I have been taking 2 VSL#3 sachets a day as I read that a pro bio increases the LDN effectiveness.

Hope this helps somewhat...
Posted 9/8/2008 1:22 PM (GMT 0)
Great info, kazzaz and JerryGarcia! Thanks to you both. LDN sounds promising...
Posted 9/8/2008 3:37 PM (GMT 0)
kazzaz--that sounds like the worm therapy I was told about.

JerryGarcia--that's really awesome! I really need to spend more time looking into LDN. What did you say to your GI about using LDN?
Posted 9/8/2008 10:55 PM (GMT 0)
Well I kind of just went ahead and ordered it then told my GI once it was working. Not that I would recommend this approach to anyone else...
Posted 9/8/2008 11:34 PM (GMT 0)
Haha, I suppose that works.

Posted 9/9/2008 4:03 AM (GMT 0)
Im stopping the treatment after the next 2 doses to see what happens. I'll keep you posted
Posted 11/9/2008 2:18 AM (GMT 0)
Hi i'm new to this online stuff but exactly where do I order Mutaflor? and what is VSL3? I have ME severe. I'd appreciate any info and help in how to go about this. Thanks , Sumitra
Posted 11/9/2008 5:58 AM (GMT 0)
Keah was the person on the Crohn's forum who tried worms.

If you pop over to the Crohn's forum and click on the "new meds" thread (you can find it in the "Crohn's Resources" thread) you can find a few good discussions on worm therapy. Obviously, they're more centred on Crohn's disease, but might give you an indication of what the therapy is like.
Posted 11/9/2008 10:23 AM (GMT 0)
I have been using TSO (worm eggs) for over a year and it definitely helped somewhat but never put me in remission. (As an aside, they completely cured me of my annual early summer moderate to severe hay fever- and I do mean completely cured, even though that isn't why i took them.) I also tried adding in some hookworms - actual worms not eggs- for the summer and they did nothing for me- in fact they flared me a bit- so I killed them off last month. Some people do overthrow conditions like asthma with hookworms, which are much cheaper as therapy than the TSO since they don't need to be replenished every couple weeks, they just sit there in the small gut for years. Anyway, TSO dampened the UC a little bit, but no remission or ability to get off prednisone (though they helped me lower the dose for awhile). That is why I have opted to move on to Remicade, and see if it does the job. I have not tried LDN yet and trying it for me would have been problematic because I have been on prednisone as well as Imuran alot, and apparently it won't work if one is immune-suppressed. So now that I am on remi it is out too. I am phasing out TSO now but am thinking of starting it up again if Remi doesn't kick in more. My GI's are opposed to me combining worms or worm eggs with Remicade but I don't really see any issues personally. LDN is supposed to work fairly fast so if you are not on any immune-suppressing drugs it sounds easy to try. Most any alternative MD will prescribe it for you.

If you are interested in helminth therapy, there is to my knowledge only one active forum on it- at helminthictherapies at yahoogroups. Go to yahoogroups and use the search and you can browse or join it- there are going on a couple thousand posts or so since it started a year ago, with most of the discussion however being about hookworm therapy rather than TSO. There was once a reasonably active forum on TSO at Ovamed's site but it is no longer running. There is a very active LDN forum on yahoogroups, but whenever i search there doesn't seem to be a whole lot of success re. IBD posted there, in my view.
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