Worm therapy, anyone? Or LDN?

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emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 9/7/2008 11:35 AM (GMT -6)   
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.
40 years old and female
Dx ulcerative proctitis, 3-5 cm, June 2008 (after 5 weeks of blood and mucous) and still flaring
UNTIL 9/4/08: Canasa 1000 mg suppositories nightly, 25 mg hydrocortisone suppositories in a.m.
CURRENTLY: Proctofoam at bedtime
Effexor 37.5, Clonazepam .5 mg (or more) and Trazodone 50 mg for sleep
2.5 mg methimazole for thyroid
Recently started probiotic (Garden of Life Primal Defense Ultra) and acupuncture
Osteopenia (and I haven't even taken steroids!)


Gigi1227
Regular Member


Date Joined Aug 2008
Total Posts : 469
   Posted 9/7/2008 11:42 AM (GMT -6)   
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

emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 9/7/2008 11:51 AM (GMT -6)   
Mine's better, too -- thanks, Gigi, and enjoy the rest of your day!
emory
40 years old and female
Dx ulcerative proctitis, 3-5 cm, June 2008 (after 5 weeks of blood and mucous) and still flaring
UNTIL 9/4/08: Canasa 1000 mg suppositories nightly, 25 mg hydrocortisone suppositories in a.m.
CURRENTLY: Proctofoam at bedtime
Effexor 37.5, Clonazepam .5 mg (or more) and Trazodone 50 mg for sleep
2.5 mg methimazole for thyroid
Recently started probiotic (Garden of Life Primal Defense Ultra) and acupuncture
Osteopenia (and I haven't even taken steroids!)


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 9/7/2008 12:45 PM (GMT -6)   

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.  http://www.healingwell.com/community/default.aspx?f=38&m=1185172


Female, Age 19
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (3 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 9/7/2008 1:59 PM (GMT -6)   
There have also been several previous discussions of the worm therapy. If you do a search, you may be able to find them.
Judy - Southern US 
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


kazzaz
Regular Member


Date Joined Sep 2008
Total Posts : 31
   Posted 9/7/2008 6:48 PM (GMT -6)   
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.

basa0806
Veteran Member


Date Joined Feb 2005
Total Posts : 2103
   Posted 9/7/2008 6:53 PM (GMT -6)   
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?
Sam 19 year old college student
Diagnosed March 2005
Remission since January/April 2006 (incident with mono)
3200mg Asacol, 25mg Amitriptlyine, Ortho Tri-cyclen lo, Imodium when I need it
"If you don't like something, change it. If you can't change it, change your attitude"
Maya Angelou


kazzaz
Regular Member


Date Joined Sep 2008
Total Posts : 31
   Posted 9/7/2008 7:01 PM (GMT -6)   
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

emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 9/7/2008 9:11 PM (GMT -6)   
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
40 years old and female
Dx ulcerative proctitis, 3-5 cm, June 2008 (after 5 weeks of blood and mucous) and still flaring
UNTIL 9/4/08: Canasa 1000 mg suppositories nightly, 25 mg hydrocortisone suppositories in a.m.
CURRENTLY: Proctofoam at bedtime
Effexor 37.5, Clonazepam .5 mg (or more) and Trazodone 50 mg for sleep
2.5 mg methimazole for thyroid
Recently started probiotic (Garden of Life Primal Defense Ultra) and acupuncture
Osteopenia (and I haven't even taken steroids!)


kazzaz
Regular Member


Date Joined Sep 2008
Total Posts : 31
   Posted 9/7/2008 9:21 PM (GMT -6)   
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.

JerryGarcia
Regular Member


Date Joined Feb 2008
Total Posts : 68
   Posted 9/8/2008 6:51 AM (GMT -6)   
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...
DX with UC Jan 07
Currently taking Colazide (allergic to Asacol and Pentasa) 2 a day
Also taking VSL3 X3 a day
Just started LDN 4.5mg


emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 9/8/2008 7:22 AM (GMT -6)   
Great info, kazzaz and JerryGarcia! Thanks to you both. LDN sounds promising...
40 years old and female
Dx ulcerative proctitis, 3-5 cm, June 2008 (after 5 weeks of blood and mucous) and still flaring
UNTIL 9/4/08: Canasa 1000 mg suppositories nightly, 25 mg hydrocortisone suppositories in a.m.
CURRENTLY: Proctofoam at bedtime
Effexor 37.5, Clonazepam .5 mg (or more) and Trazodone 50 mg for sleep
2.5 mg methimazole for thyroid
Recently started probiotic (Garden of Life Primal Defense Ultra) and acupuncture
Osteopenia (and I haven't even taken steroids!)


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 9/8/2008 9:37 AM (GMT -6)   
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?
Female, Age 19
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (3 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort
 


JerryGarcia
Regular Member


Date Joined Feb 2008
Total Posts : 68
   Posted 9/8/2008 4:55 PM (GMT -6)   
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...
DX with UC Jan 07
Currently taking Colazide (allergic to Asacol and Pentasa) 2 a day
Also taking VSL3 X3 a day
Just started LDN 4.5mg


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 9/8/2008 5:34 PM (GMT -6)   
Haha, I suppose that works.

Female, Age 19
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (3 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort
 


kazzaz
Regular Member


Date Joined Sep 2008
Total Posts : 31
   Posted 9/8/2008 10:03 PM (GMT -6)   
Im stopping the treatment after the next 2 doses to see what happens. I'll keep you posted

sumitra
New Member


Date Joined Nov 2008
Total Posts : 2
   Posted 11/8/2008 8:18 PM (GMT -6)   
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

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 11/8/2008 11:58 PM (GMT -6)   
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.
Co-Moderator Crohn's Forum.


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 11/9/2008 4:23 AM (GMT -6)   
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.
Pancolitis 20 years ago, full med-free remission 10 years,
Flaring/simmering on and off ever since, allergic to all 5ASAs
10 20 17.5 15 12.5 10 mg 8 7.5 20 mg pred, 100 mg Imuran
Probiotics (Primal Defense and others), TSO, hookworm
Turmeric/circuminboswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade newbie
 
 
 

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