Research suggests Crohn's remission with worms

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clavman
Regular Member


Date Joined Sep 2007
Total Posts : 39
   Posted 3/15/2008 2:01 PM (GMT -7)   
 
FYI--Might find this interesting.  Researchers using whipworms show 70% remission in small study of 100 patients. Link:
 
I edited out the link do to the amount of advertising on the site and I do believe there is a thread re this subject.  Let me see if I can pull it up for you.
Thanks
Kitt
 

Post Edited By Moderator (stkitt) : 3/15/2008 4:01:04 PM (GMT-6)


Keah
Veteran Member


Date Joined Nov 2003
Total Posts : 7314
   Posted 3/15/2008 4:47 PM (GMT -7)   
Hi There! I actually used the TSO from Ovamed. Their website has lots of great info about the treatment course, costs, rules to importing them, clinical trial reports and even a message board similar to this one.
 
 
I used the 10 dose (20 week) course of 2500 Ova. At the time, I was willing to try almost anything and really hoped to experience the relief from joint pain that was reported in the studies from the U of I. My promary was willing to write the necessary letters so that I could get the shipment past Customs,but we had no idea what dose I should try. Because I was in a situation where I could afford it, I opted to use the highest available dose.
 
I think I was close to halfway through the course when I realized that I had not had any of my usual nausea. That alone made my investment worth it! I also then realized that almost all of my gut pain was gone and I was having less and less D. When I finished the course, my gut was great, but my joints weren't. However, I later found out that I was just past the line into thyroid failure at that time, so I can't say if the thyroid problem exacerbated my joint and muscle problems or if the TSO failed to help them.
 
I should have entered the "maintenance" phase of treatment after the success that I had, unfortunately, between the thyroid failure and joint problems, I was forced to stop working and could no longer afford to pay the entire cost of continuing my treatment with TSO.
 
I have discussed this treatment option at great lengths with my current GI and he has several patients using it who failed to respond to the other medical treatment options. Since it did work so well for me, I'd encourage anyone who can afford it to give it a try, assuming they can get past the idea of swallowing worm eggs and have wormies int heir guts. For me, neither was a problem. When I'm sick, I'll do just about ANYTHING to get better! tongue
 
Please, utilize the ink I posted above (click on the word OVAMED) and do some reading. I printed out many of the studies for my Doc to read so that he would help me get them imported. The reports fromt he studies run were very impressive and many patients hit remission during the treatment. I haven't seen anything with longer term reports tho and haven't had the time to follow up with members of the Ovamed support group. I do know that Ovamed hoped to conduct Clinical Trials in the US and Europe, but that hasn't heppened yet.
 
Feel fre to ask me any questions you might have.
Keah a.k.a. Wormy
 God helps those who help themselves.
Please help us support this invaluable forum.
Crohn's Forum Moderator


Keah
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Date Joined Nov 2003
Total Posts : 7314
   Posted 3/15/2008 4:48 PM (GMT -7)   
PS - Clavman, I'd love to read that study. Could you please email a link to me?
TKS

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 3/15/2008 10:36 PM (GMT -7)   
I've been looking into hookworms, which live longer than the TSO nematode and may have a better success rate for CD. Keah, I am curious, why did you choose TSO? I need to do more researching but it appears that both the TSO and hookworms are not effected by other typical CD drug therapies. So maybe you could continue on the drugs until the worms have a chance to get established (which might be 16+ weeks for hookworms). If you can stay on the drugs, then I'm thinking adding worms couldn't hurt! Except for the cost, of course. Pricey little wormmies! I reacted to Remicade and Humira, so my options are getting limited....

I read the hookworm thread a while back but I don't remember it discussing how to get them. I found this website that contains a hilarious story from a guy who went to Africa to get infested. Turns out the guy started the company that now offers hookworms (a link to the companies website is at the bottom of this page -- its a forum entry "New web site by luckbeaweirdo, 02/16/2007"). The story is funny even if you aren't interested in an infestion of your own.

http://www.kuro5hin.org/story/2006/4/30/91945/8971
Moderators -- please help -- is it OK to give this website?? I'm still new at this.

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 3/16/2008 5:22 AM (GMT -7)   
It should be fine as long as YOU have no vested interest in this site.....

I am glad Keah posted about her worm therapy.....

Sorry Keah that costs and not being able to work anymore has gotten you into this position now
I know I enjoyed reading your journey with the worms daily....Luvs
LYN
  DX With Crohns,Pyoderma Gangrenosum, Anxiety/ Panic and Other Disorders
 
Moderator @ Anxiety Panic..Alzheimer's..Co mod @ Crohns
 
   
 
                   
 


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 3/16/2008 7:11 AM (GMT -7)   
Hi LYN. I don't have a vested interest in this wormy company. Thanks for letting me know the posting rule.

I have a lot of questions about hookworms and TSO and am going to really dig into the scientific study literature. I also have practical questions about maintaining the colony, such as do antibiotics for sinus infections etc wipe them out, and does colonoscopy prep kill them, and gosh what will the colonoscopy Dr say when he sees them!!

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 3/16/2008 7:18 AM (GMT -7)   

Good Morning

I like Keah's link better as the other was an article from a newspaper.

Thank you Keah for posting your info and I think it is much more helpful and was from the University of Iowa.  

clavman

If you want to put the link back up, please do so, I apologize if I edited misunderstanding, and please always email me as you do not have yours available or I woud have shot you an email first. :)

Thanks Lyn, I appreciate your help.

Happy Sunday to all
Kitt


 
Kitt, Moderator: Anxiety ~ Panic  ~ Crohn's
Not a mental health professional of any kind
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~
 


Keah
Veteran Member


Date Joined Nov 2003
Total Posts : 7314
   Posted 3/16/2008 6:22 PM (GMT -7)   
Three years ago, (wow, I can't BELIEVE it's been that long) there was a lot of chatter about the U of I studies on TSO. Unfortunately, at the time, you had to be a resident of Iowa. A few of us here joked about renting a room and all of us using that as our address just so we could apply to the study! We even planned Margarita parties to kill off the old worms before we got our next dose! LOL

At the time, I was suffering terribly from the joint pain of Spondylitis, which is closely associated with IBD. Although I was on Pentasa for my guts and Enbrel for my joints. Neither was helping much and I was still having gut complaints, however, my test results weren't really showing much, so the Docs wouldn't consider putting me on any additional meds. I was sick enough to be miserable, but not sick enough to qualify for stronger/more aggressive medications and I didn't come close to qualifying for any of the other clinical trials underway. This left me literally between a rock and a hard place and I was willing to try almost anything to find relief.

Then the FDA changed the rules and the U of I could not afford to continue their trials, even though they had proved so successful. They had to find a partner to continue the development for them and they chose Ovamed. Now, I can no longer remember what Ovamed's name was at the time, but they had been around for years producing (or breeding??) leeches for medical use, so they did at least have some experience in this field.

Some research lead me to the Ovamed website and I discovered that all I needed to get some TSO was a lettre from my physician to the FDA stating that I had failed my current meds and TSO would be a last ditch attempt to restore my health. Oh and he had to guarrantee that he would monitor my treatment acordingly. It seemed easy enough for me and I knew my Doc well enough to know he'd agree to it if I just provided him with copies of the reports. I even wrote the letter. He just signed it and kept a copy for my chart. Out came my VISA card, I faxed the order on Thursday, it was shipped in Germany on Monday and I took my first dose on Tuesday! Customs cleared the package electronically while it was over the Atlantic Ocean.

So, I chose TSO at the time, because it was the only option easily available. Now, having a choice between TSO and hookworms, I would likely still choose the TSO. Truth be told, I don't like the idea of being infected with worms which would normally thrive in a human host. I would turn away from the possibility of using human whipworms too. I like the idea that Ovamed uses porcine whipworms which do not live long enough to reproduce and therefore pose little risk of further infestation to myself, my household or my community. If I need more worms, I just need to drink more ova. That's easy enough. Plus, I don't have to have that awful sounding cough, deal with a skin rash or marinate my stinky poop! That last one alone is very significant since I live in a tiny apartment. The stink could have the neighbors at my door in mere hours, expecting to find a dead body!

I've got to say, that story about the trip to Cameroon was certainly a bit over the top - even for someone like me who was desparate. Perhaps I've just worked in Health Care too long and have become too paranoid about the risks of Infectious Diseases, but I doubt there is any chance you'd ever find me walking barefoot through human excrement anywhere!

And so, that's my story. Anyone who has any questions should feel free to ask away. My email is also available for anyone who'd like to talk that way too.

Be well!


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 3/17/2008 5:03 AM (GMT -7)   
OMG Keah I cannot believe it has been that long either.........
Time ...where does it go other than me on here or on potty lol.........

Take care you .....LYN
  DX With Crohns,Pyoderma Gangrenosum, Anxiety/ Panic and Other Disorders
 
Moderator @ Anxiety Panic..Alzheimer's..Co mod @ Crohns
 
   
 
                   
 


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 3/17/2008 7:11 AM (GMT -7)   

Keah, holy moley.  I knew that study was done in Iowa as we share a boundary line with Iowa.

Thanks so much for sharing your info.  Take care
Kitt


 
Kitt, Moderator: Anxiety ~ Panic  ~ Crohn's
Not a mental health professional of any kind
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~
 


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 3/18/2008 11:22 PM (GMT -7)   
Hi Keah, what is the name of your GI who is open to worm therapy?

Keah
Veteran Member


Date Joined Nov 2003
Total Posts : 7314
   Posted 3/20/2008 11:13 PM (GMT -7)   
NJMom, I've been seeing Dr Peter Legnani at Mt Sinai. He's been very good to me although I don't technically have the Dx of CD right now. He ran all the right tests, but my guts were looking good at the time and then my Rheumy got me started on Humira. I'm still not symptom free, but my gut is much better.

Feel free to send an email if you want to talk more about the Docs.
Keah a.k.a. Wormy
 God helps those who help themselves.
Please help us support this invaluable forum.
Crohn's Forum Moderator


BalS
Regular Member


Date Joined Mar 2005
Total Posts : 311
   Posted 3/21/2008 11:25 AM (GMT -7)   
Hi FallColors,
I am from the Ulcerative colitis forum and like yourself i'm very interested in hookworms. I started with TSO and found they were working well for me but the expense stopped me from persuing it further. I read about Prof. Pritchard's trials with hookworms at Nottingham university. I later discovered through a friend that her friend's son started the trial in may/june 2007. He was on the trial for 6 months and had recovered from crohns enough to go back to work and give up pred but he is still on pentesa. This was enough for me to convince Prof. Pritchard and the hookworm team at the Nottingham University hospital to let me try hookworms on 9th of January 2008. I had 10 hookworm larveas and i'm seeing great improvement in my condition. i will be doing a full report of my experience with hookworms in April when it will have been 3 months from penetration.
Bal
UC - Flare-up since Dec2004
3000iu Vit E Enema
3x3 tablets Colazide 
10mg Predinisolone enema
2  Predfoam - 20mg
Asacol - none now - became immune to them after 2 yrs
 
 
 


Keah
Veteran Member


Date Joined Nov 2003
Total Posts : 7314
   Posted 3/22/2008 1:24 AM (GMT -7)   
Tsitodawg, The process of having worms migrate their way through my vascular and pulmonary systems is a little too much for me and that's why I'd still choose to use TSO, if I were to consider worms again.

The whipworms are so tiny that you never see any part of them. The Ova are microscopic and once they fall off, there isn't much to see. During the 6 months I used them, I never saw anything unusual in my stool. Actually, it was the first time in a long time that I had real bowel movements to look at! LOL

Tapeworms genrally grow to between 15 and 30 FEET long. The largest on record was 59 feet long. HOLY MOLEY!!!!! This is a horse of a very different color and explains why you had such a horrible experience. Nourishing yourself AND a parasite that big certainly would take a lot out of you and that little stinker was undoubtedly stealing most of the nutrients that you took in. Given your experience, I'd be extremely alarmed at that thought of purposely infesting oneself with any type of worm. However, the longstanding history that man has had with parasites seems to indicate that we can live quite well with some types of intestinal parasites and the increase in auto-immune diseases in the industrial countries definitely lends creedance to the hygiene hypothesis. BalS and I certainly benefitted from the infestations that we have had and if the TSO had helped the joint pain from my Spondylitis, I'd have found a way to continue or resume my treatment with them.

It's likely that the people you encountered with worm infestations had more than one type of worm. Round worms grow much larger than hookworms and do considerably more tissue damage. Again, the larger the parasite, the more they take out of you.
Keah a.k.a. Wormy
 God helps those who help themselves.
Please help us support this invaluable forum.
Crohn's Forum Moderator


BalS
Regular Member


Date Joined Mar 2005
Total Posts : 311
   Posted 3/22/2008 7:15 AM (GMT -7)   
Hi tsitodawg,
I think you have confused hookworm with other form form of worms. Hookworms average about 10mm in length and live in the small intestine of the host.  They do not penetrate the body, its the larvea that penetrates the body and grow into hookworms inside our body.  Their lifecycle does not permit them to multiply inside our body.  Hookworms are dangerous to Humans if you have them in thousands. 10 hookworms, which is what I have now are perfectly safe for them to be approved for trials.  Trials have already proved Hookworms to be  successful for asthma.  Trials for crohns with hookworms are underway at the moment and I just jumped the gun and managed to get them for unlcerative colitis.  There will be a trial with hookworms for ulcerative colitis soon.    Nottingham university is not interested in giving IBD sufferers Hookworms, what they are trying to do is to understand why it works so that they can produce a pill that people like us and other immune related sufferes can take the pill.
 
If you want me to give you links to the research I can do that but you only have to google hookworms,  crohns, and Nottingham and you should pick up most of the research conducted.  The university have done some TV programmes on this as well which i can try and get a link to, if you want.
 
If one is hot happy with hookworms then it only takes a pill to get rid of them  but i plan to keep mine if I come off all medication.
 
Bal
UC - Flare-up since Dec2004
3000iu Vit E Enema
3x3 tablets Colazide 
10mg Predinisolone enema
2  Predfoam - 20mg
Asacol - none now - became immune to them after 2 yrs
 
 
 


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 3/22/2008 8:12 AM (GMT -7)   
Hi all,
Yes, no tapeworms, thank you. What I like about TSO and hookworms is that they don't reproduce in the body and it would be very difficult to pass them on to someone else as long as you use a toilet (and toilets are something we with CD know how to use!). So you will have no more than the number of wormies administered to you. I am leaning towards hookworm, because from what I am reading, they have better symptom reduction rates (even remission) for CD. I've read several journal articles about studies Pharma companies are doing to find out how TSO, hookworm, and other wormies effect our immune symptoms. They are trying to find out what the worms secrete -- so they can bottle and sell it (Wonder Worm Juice!). I think that means there may really be something to this if Pharmas are spending money on it.

I have read that TSO and hookworms aren't as effective for UC. BalS -- I hope they work for you!

I also like the smaller cost for hookworms and that it appears that you may not need to be re-infested for 3 - 5 years. It appears with TSO or hookworm that you can keep on your current meds without hurting the worms, and it doesn't appear that such small numbers of worms are harmful (although it sounds like you could have Gi symptoms for +/- 9 weeks until the wormies settle in and your body adjusts. So I'm asking myself what will it hurt? It also sounds like it takes many months for your immune system to really calm down, so I'm thinking it is time to get started. I have rectal CD and can't take Remicade or Humira (I had nasty reactions to both). So my drug options are getting limited.

I contacted the hookworm company and got an immediate response to my questions. Very helpful. I think I'm going to go for it. Now I just need to scrape up the money...

Here are more links. I've added company websites only because they provide links to a munber of science articles.
http://www.medicalnewstoday.com/articles/82632.php -- Article from September 2007
http://biotherapy.md.huji.ac.il/new_page_5.htm -- Another article
http://scholar.google.com/scholar?hl=en&q=helminths+crohn%27s&spell=1 -- A number of science articles
http://autoimmunetherapies.com/index.html -- This is the hookworm company. Look at the "Science" page for the theory and some study abstracts.
http://www.ovamed.org -- The TSO company. Look at the science articles

BalS
Regular Member


Date Joined Mar 2005
Total Posts : 311
   Posted 3/23/2008 8:15 AM (GMT -7)   
FallColors, you may find this link interesting
its a forum for people who have had hookworms through the clinic in Mexico to share their experiences.
Bal
UC - Flare-up since Dec2004
3000iu Vit E Enema
3x3 tablets Colazide 
10mg Predinisolone enema
2  Predfoam - 20mg
Asacol - none now - became immune to them after 2 yrs
 
 
 


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 3/23/2008 10:48 AM (GMT -7)   
Many thanks BalS!
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