Think I'm going to try hookworms

New Topic Post Reply Printable Version
42 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 4/5/2008 6:55 AM (GMT -7)   
Well, I think I'm going to give hookworms a try (Necator americanus).  Thought I would put out one more post to see if anyone has been infected with them and whether they see any benefit.  I've read the posts about the TSO worms, but it is too expensive for me and sounds like it may no longer be available.  I don't recall reading posts about Necator americanus.
 
My thoughts are this:  I have rectal CD with 3 abscess and 2 perineal fistulas/setons, but lately my BMs are irregular.  I am concerned that the CD is spreading.  I am allergic to Remicade and Humira.  So it may be a while until another modern drug is available for me that will really stop the rectal disease process.  sad sad sad
 
I have been scouring the available literature (science studies and clinical trial information).  It appears that CD is one of several autoimmune diseases that are helped when the worms modulate the immune system in order to be able to live in the intestine.  The current study and clinical trial observations strongly support the conclusion that the worms really tune down CD inflammation.  Several studies reported no adverse effects at the 50-worm dose after the initial adjustment period.   
 
I have found only a very few drugs that wipe out the worms and they aren't any of the CD drugs I've heard of.  So it looks like you can stay on other typical drugs, which is a good thing because it appears to take many weeks for the worms to alter their new home environment to their liking.  And you can get rid of them quickly if you decide you don't want them.
 
So if I can still take other meds, still have colonoscopies, etc., and can get rid of them at any time, then my thinking is it all comes down to money and a trip to Mexico.  Even if the worms don't completely stop the disease process, if it helps slow it down I'm thinking it is worth a shot.
 
Has anyone tried this???  Your actual experiences will help me decide if this is worth the money.
Thanks in advance!!

Crohn'snme
Veteran Member


Date Joined Feb 2007
Total Posts : 734
   Posted 4/5/2008 11:22 AM (GMT -7)   
Wow, has this been studied? Where did you come up with all those facts and information. I would proceed cautiously.

ginger71
Veteran Member


Date Joined Nov 2005
Total Posts : 722
   Posted 4/5/2008 11:26 AM (GMT -7)   
Didn't Keah take the worms?

37 year old female. Dx'd and undx'd a few times. Was just redx'd again 04/2007.
History of rectal abscesses and fistulas (29 surgeries including abscess I & D, exploratory surgeries, 4 C-ton drains and 1 fistula plug) Have also had several self bursting abscesses.
1st Remicade infusion 6/5/07-still taking it.  Praying I'll get better soon so we can have a baby.
Ginger :)


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 4/5/2008 11:37 AM (GMT -7)   
Hi Ginger71. Yes, I think she took the TSO worms. There was a thread or two going around in the last month or so, which started my investigation.

Hi Chron'snme. Here are some links that I posted in one of those earlier threads. Now that I've looked around, I know there is much more out there. If you are interested, email me and I can provide more. The hookworm company website has good links to artlices -- but clearly they are biased in favor of selling you wormies. I've added company websites only because they provide links to a nunber 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

I'm thinking it could just be a waste of money, but at least it doesn't sound like there are bad side-effects (other than loss of $$). And if it works.....

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 4/5/2008 11:39 AM (GMT -7)   

Here's a link to explain...

 

 
Good luck and keep us posted :)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


Crohn'snme
Veteran Member


Date Joined Feb 2007
Total Posts : 734
   Posted 4/5/2008 11:53 AM (GMT -7)   
wow! it doesn't sound so crazy

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 4/5/2008 1:30 PM (GMT -7)   
If you do decide to do this please keep us posted on your experience. I have read some interesting things about this as it is supposed to effect other autoimmune disorders too. It seems to gross to be true but if you try it let us know all about it.
Sj

Mac_Gyver
Regular Member


Date Joined Aug 2007
Total Posts : 350
   Posted 4/5/2008 2:01 PM (GMT -7)   
My skin just crawls thinking about it, ah I don't know if I could do it.
Symptoms Of Crohn's June of '06 (21 years old 285lbs). Colonoscopy in Jan '07 no sign of Crohn's.
Surgery for a Fistula in April '07, diagnosed suggestive Crohn's in May '07. August '07 small bowel follow
through, diagnosed with Crohn's (23 years old 180lbs). On prednisone and will be starting Tysabri Soon.
============================================


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 4/5/2008 2:39 PM (GMT -7)   
Hello Sjkly. Yes there is a fair amount in the literature and antidotal acccounts about the benefits for alleregy/asthma suffers. Fortunately, I have neither. The only way i will be able to tell is by seeing if the peri-rectal fistula stuff I have going on gets better. Actually, I'll be happy with it just not getting worse! That may be my measure of success. I want to talk to my Drs to see if they want to measure/observe anythng as time goes on. I see my GI Dr on Tuesday. That should be an interesting conversation because that medical school is sponsoring an anti-hookwork vaccine trial.... And here I WANT them!

Hey FinalMacGyver -- Yes, kinda creepy. Glad I am a biologist. It does seem a little too close to "the worms crawl in, the worms crawl out..."

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 4/5/2008 5:31 PM (GMT -7)   
Hi Is there any possibility of them spreading to places you might not want them? lol gail

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 4/5/2008 8:06 PM (GMT -7)   
Hi Gail. Not that I know of. The worm larvae do quickly travel through your blood and lungs before ending up in your intestine. But they won't stay in your blood and lungs because they will die.

Their lifecycle stages are a bit complicated. The adult female worms do produce eggs while in your intestine which pass out of you. The eggs don't hatch inside of you (which means if you were given 50 worms, you will have not have more than that number). If you poop on the ground, the eggs will hatch in several days. Anyone walking through your poop in barefeet could get the worms. So don't poop on the ground and keep your shoes on!

I suggest you look up hookworm on Wikipedia.org for a good explanation of their lifecycle.

The Wikipedia page on "helminthic therapy" is also quite informative -- but it sure does look like it was writen by a company. So be forwarned (people do know that anyone can change Wikipedia, right? It can be very wrong and very biased) This sentence on this page does appear to correctly summarize several studies:
"Success rates for helminthic therapy, as measured by the number of people achieving remission range from 56% for Ulcerative Colitis using TSO as the helminth[8], 72% for Crohn's using TSO, and 100% for Crohn's disease using hookworm. Contrast that with the remission rates for the new biologicals as described below, in one study sponsored by the drug maker, Humira achieved only a 52% remission rate in Crohn's patients[22]."

iggie270
New Member


Date Joined Jul 2005
Total Posts : 12
   Posted 4/8/2008 2:45 PM (GMT -7)   
Wow, that sounds interesting.

FinalMacGyver, yea, it does sound a bit creepy. Especially after reading that Nottingham article where it talks about the skin itching as the worms crawl in....

toilnaa
New Member


Date Joined Apr 2008
Total Posts : 5
   Posted 4/8/2008 8:31 PM (GMT -7)   
Sounds scary to me, but I will check out the thread you indicated and please, do keep us posted. Sorry you are having such a problem.

Post Edited By Moderator (Ides) : 4/8/2008 9:44:03 PM (GMT-6)


Crohn'snme
Veteran Member


Date Joined Feb 2007
Total Posts : 734
   Posted 4/8/2008 8:52 PM (GMT -7)   
Really consider everything before deciding. This is a huge decision. Maybe gather more information and make sure this is right for you. Just concerned.

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 4/9/2008 5:26 AM (GMT -7)   
Hi guys,

Met with my GI yesterday. I'm going on 6MP for now since I am allergic to Remi and Humira.

I did ask him what he knew about hookworm. He knew about the Hygiene Theory and thought there may be something to it. He is a cautious guy. He said he wasn't that impressed with the TSO research. He said some appeared to get benefits but was dissappointed that none achieved remission. He said it didn't appear to hurt anything or impact other treatments, so it may just be a waste of money. Which was what I thought too. As for hookworm, he wanted to see the studies, so I am going to send him what I have found in the literature. I'll report back to you after he reviews the studies.

Mike W
Regular Member


Date Joined Aug 2006
Total Posts : 89
   Posted 4/9/2008 11:05 AM (GMT -7)   
This is fascinating, please keep us updated!
Diagnosed in 1999.
No surgeries.

Age : 31

Currently on no meds. Just probiotics.


jhess
New Member


Date Joined Oct 2004
Total Posts : 12
   Posted 4/9/2008 10:03 PM (GMT -7)   
I read about the therapy a few years ago and it look promising. I was hoping that it would be better studied and then I could stop all these other things that I am never quite sure of the long term side-effects. I would hope that someone that had those things would actually talk about it.

7007
Regular Member


Date Joined May 2007
Total Posts : 59
   Posted 4/11/2008 6:47 AM (GMT -7)   
I'm trying hookworms for Crohn's. I used www.autoimmunetherapies.com and got 10 hookworm larvae on Dec. 17, 2007. The theory is sound; they are currently doing a trial for Crohn's at Nottingham University, and I spoke with their study coordinator (Dr. Fortun) and their parasitology expert, Dr. Pritchard. He assured me of their safety (the only risk is anemia, but that is at much higher numbers) and said they've already shown efficacy for allergies. But it's early days, as they don't really understand the complexities of what the worms do, and they want to design a drug ultimately. They are basically a perfectly designed immunomodulator, without any of the side effects that other immune suppressants bring. I was going to try TSO, but the expense was extraordinary, and they were blocked by the FDA in December, so I researched and chose hookworm.

They're just starting to work. It's been a roller coaster ride though; I had the most severe reaction of their patients so far, with the lowest number of larvae. But I'm also on no medication, and came into it very sick, with inflammation in my ileal cecal valve so bad that I feared it was stricturing, night sweats every night, and diarrhea for months. I had failed Humira in August and was waiting the 90 days to qualify for the Prochymal trial. My reaction to the larvae were; gastritis the first week (though I might have caught something in travel), then I got arthritis from weeks 3 to 8 (never had arthritis before), and basically had diarrhea on and off until week 12, which was my first taste of true wellness. I'm at week 16 now, and improvements so far have been; gained 15-20 pounds, can eat WAY off my diet (low carb SCD) without ill effects, have had a few solid bowel movements, the pain in my ileal cecal valve (and the frequent blockages) was gone by week 3 and hasn't returned, and I haven't had night sweats in over 8 weeks (except when I had the flu.) I also have no bowel pain anymore, and most of my bowel movements are soft but solid, when before I started it was all D. I still have a ways to go, but so far I am pleased with my improvements, especially dietarily. (I'm eating things that would have sent me spiraling for weeks.) You can read extensively of my journey (deborawade37) at the forum for those thinking about or trying helminthic therapy;

http://groups.yahoo.com/group/helminthictherapy

The one Crohn's proof of concept study took 45 weeks before remission happened, and they started getting better after week 17. (http://gut.bmj.com/cgi/content/extract/55/1/136) That was with more larvae, though. Most people react negatively to more than 20 larvae, which is why they're only using 10 for the Nottingham study. I have heard from 2 people in that study in total remission after 6 months and 4 months.

The worms live for 5 -18 years, so if it works, you wouldn't have to do anything until then, and once you're inoculated, the re-inoculations do not cause the same negative reactions, so adding more down the line shouldn't be an issue except for skin response.

I didn't get any skin itching, by the way.

I'm going to UCSF on May 2nd to get all my blood tests done to compare actual CPR levels and such. My doctor, by the way, was very supportive of trying TSO, but had never heard of hookworm. He now has another patient trying it, so we will be two patients educating him.

I would go for it; I just wish I tried this a decade ago, if it were available. I have tried all things Crohn's except for methotrexate and Tysrabi, and though it hasn't been easy getting through the initial inflammatory period (weeks 3 to 12, though most people get only minor transient symptoms), the low risk and the high efficacy rate of these worms are worth it. Investigate the hygeine hypothesis and look at some of the emerging theories. It seems disgusting, but we have lived with parasites since humans existed, and only in the last 100 years has that changed, which also coincides with the rise of autoimmunity. Check out this MS study that shows those populated with helminths have hardly any relapses compared with those worm free: http://www.medscape.com/viewarticle/551183

Eating toast and loving it,

Wade
Crohn's for 20 years, been flaring for 2 years, 1 resection 2004 to remove descending colon, no meds but HOOKWORM!

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 4/11/2008 9:14 AM (GMT -7)   
7007!!!!!! Thank you for sharing your experiences with us!!! I've checked out the yahoo forum and was interested to read other people's experiences.

Are you doing the "Multi-stage" treatment where you get 50 larvae over three visits? I have rectal CD with no other intestinal symptoms so I thought I would save money and get the Standard protocol of 50 larvae all at once. Your thoughts on this??

You said you had gastritis the first week. At that point, the larvae would still be "traveling" and not yet in your intestines. So I am thinking you caught something else in Mexico.

Can I ask you to describe your travel to the clinic? Did you fly into San Diego and drive or take the trolley? Did you stay in Tijuana? If so, where did you stay and would you recommend it? Was this a two or 3-day trip??

I am very excited to give this a try. My rectal CD is bad -- even my DR said the disease was severe -- and I am allergic to Remicade and Humira. My Dr is going to put me on 6MP if my blood work comes back OK next week. But 6MP isn't as good as Remi/Humira for fistulas and I feel I am just going to get worse over time.

I am not at all concerned about having such a low number of hookworms. You are right that humans have co-existed with them for a long time. We have other fauna and flora in our gut (or we couldn't digest food), so why not a few more? it appears for autoimmune disease the relationship is truly symbiotic.

Thanks again!!

Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 4/11/2008 11:07 AM (GMT -7)   
what sounds weird to me, is if it's a study, why are you having to buy the larvae?

other than that, the theory sounds so plausible.....but another questions i have is, if most of us in civilized society no longer have these parasites, how come only a few of us develop crohn's?
"I am he as you are he as you are me and we are all together!" - The Beatles

doesn't that just sound cool when you sing it?


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 4/11/2008 11:31 AM (GMT -7)   
Hi Glad Bag,

I believe the Iowa State trial is aleady closed. The Nottingham University trial may still be open but it is in England. I think these are second round trials that are focusing on dosing. The first round conclusions show there is something beneficial about hookworms.

The company that sells the worms started several years ago. Obviously he was trying to get ahead of the curve - and he claims he got his own severe allergies and asthma under control by going to Camaroon and getting hookworms. Interesting story.

As to why some get CD and other autoimmune diseases. I think the theory remains that there is a genetic problem that pre-disposes us. In the US, hookworm was widespread in the early part of the 20th century (especially in the Mississippi delta areas) until the US government started the eradication program. The hygiene theory shows that CD and other autoimmune diseases have increased since the eradication programs. I thought the "increase" in autoimmune diseases was simply an artifact of better diagnosing and reporting. But the hygience theory journal articles I've read claim that the disease increase is far greater in the last several decades (from the 40s - 50s?) than what you would expect to see with better diagnoses and disease reporting. It breaks my heart to read the number of new cases of just CD reported each year!

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 4/11/2008 12:36 PM (GMT -7)   
So in lay terms - does this mean we have over active immune systems that end up destroying our guts and if we put worms in there it gives it something else to fight and then are guts get a break?
26 Year old married female law student.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid.  For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn.  I also have bad acid reflux and have been on PPI's since age 13.  I have been through prilosec, prevacid, and nexium.  Currently I am on Protonix in the morning and Zantac at night.  I alos take a birth control pill to allow some fun in my life.
 
 


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 4/11/2008 12:57 PM (GMT -7)   
Hi FitzyK23!

Close, but not quite. If the worms simply attached to our intestines, our body's immune system would attack and kill them. The worms would have died out long ago if they hadn't come up with a clever solution. The worms secrete something into our bodies that causes our immune system to not see them. They "modulate" or "down-regulate" the immune system so they can survive. This modulation affects not just our intestine's immune system but our entire immune system. Claims are that other immune system diseases like allergies, asthma, MS, and arthrits can be helped by the worm's modulation of our immune system. Remicade, Humira, etc., are immune regulators but they target only one aspect of the immune system (TNF inhibition). It appears what the worms do is much more sophisticated. Savvy little wormies!!

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 4/11/2008 2:48 PM (GMT -7)   
sounds very cool. but do they have any long term studies? What if they modulate the immune system in a negative way that no one knows about yet?

still, it's probably safer than remicade, prednisone, imuran, etc.

Please please keep posting about your results if you decide to do this.

I've wanted to try TSO since I first heard about it in 2002ish, been trying to get a study going in Canada to no avail so far. Fellow canadians, please keep mentioning these worm therapies to your GIs. Maybe we can get a study going up here soon too.

Mike W
Regular Member


Date Joined Aug 2006
Total Posts : 89
   Posted 4/12/2008 8:43 PM (GMT -7)   
How come the only place you can get hookworms is Mexico? I'm under the impression that Mexico is not the gold standard in modern medical care. Not trying to be a party-pooper, if this really is a treatment with a high upside and small downside, I'll be first in line. But I don't know if I'd ever be able to convince my family that this is safe if the only place I can get it is Mexico.
Diagnosed in 1999.
No surgeries.

Age : 31

Currently on no meds. Just probiotics.

Post Edited (Mike W) : 4/12/2008 10:58:26 PM (GMT-6)

New Topic Post Reply Printable Version
42 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Sunday, December 04, 2016 3:34 PM (GMT -7)
There are a total of 2,732,719 posts in 301,047 threads.
View Active Threads


Who's Online
This forum has 151202 registered members. Please welcome our newest member, Ed Ski.
356 Guest(s), 4 Registered Member(s) are currently online.  Details
mtm3461, Gear, MauiViv, BKelly


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer