hookworms for Crohn's!

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7007
Regular Member


Date Joined May 2007
Total Posts : 59
   Posted 6/5/2009 6:33 AM (GMT -7)   
Hi there,

Just wanted to update that I have been experimenting with hookworms for Crohn's for the last 1.5 years now. I am in remission after reinfection with 10 larvae 4 months ago. The first 10 in December 2007 caused a pretty bad reaction. You can read all about it on my website, www.waitingforthecure.com

I was interviewed by CBS and they had a good piece on hookworms and Crohn's:

http://cbs5.com/health/hookworm.treatment.therapy.2.1016319.html

They also did a piece on allergies/asthma:

http://cbs5.com/health/hookworm.treatment.therapy.2.1015341.html

They're completing a trial at U. of Nottingham using 10 hookworms for Crohn's in June. Hopefully they will publish soon. They've already completed a trial with allergies, asthma, and soon will start an MS one. There's also TSO (trichuris suis, or pig whipworms) available, but it's expensive. www.ovamed.org

I'm on no other medications, so I know it's the worms. My CRP and ESR are finally normal! This latest infection caused almost no side effects, so reinfection is a piece of cake. I've figured out how to do egg counts, and I have 800 eggs per gram. You can't infect anyone else since they require an outside incubation period in warm, tropical soil to become reinfective. They should live for an average of 4-5 years, but I lost my infection within the first year, and became sick again before I figured it out. Now I'm keeping careful track.

Google the hygiene hypothesis. A new study found lack of parasites and the hygiene hypothesis are probably the reason we have all of these autoimmune diseases:

"Parasites represent a major selective force for interleukin genes and shape the genetic predisposition to autoimmune conditions. Previous identification of polymorphisms in some of these loci, and their association with autoimmune conditions, prompted us to investigate the relationship between adaptation and disease. By searching for variants in IL genes identified in genome-wide association studies, we verified that six risk alleles for inflammatory bowel (IBD) or celiac disease are significantly correlated with micropathogen richness. These data support the hygiene hypothesis for IBD and provide a large set of putative targets for susceptibility to helminth infections."

http://www.ncbi.nlm.nih.gov/pubmed/19468064

Definately worth looking into. I tried all the 5 ASA's, Remicade, Humira, xifaxin, flayl, 6MP, SCD, VSL, LDN, and so far, hookworms are the only thing that enables me to eat what I want again. First beer in 15 years....mmmmm.

The medical community should be ashamed there isn't more research into this. I've had Crohn's for 21 years and finally am getting my life back.

Debora Wade

yellowfin43
Regular Member


Date Joined Aug 2008
Total Posts : 305
   Posted 6/5/2009 7:08 AM (GMT -7)   
Thanks for the info. I am considering trying this treatment. Remicade worked for me for a short time but then lost its effectiveness. If I do elect to go this route I will post the results for others to read. Thanks again, Tony
Crohns 30 years. Ileostomy for 15 years. Symptom free for 14 years until 8 months ago. Now on Remicade, B-12 injections and iron. Feeling much better!
God Bless. Tony


PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 6/5/2009 7:31 AM (GMT -7)   
Hi Debora - James Bond 007

Well it sounds interesting. I am glad it's working for you. I had heard about TSO, but that was a little expensive. I hope your research is carried forward, and provides a cure for Crohns, IBD and UC. Keep us posted.

Thanks for sharing your experience. I am sure the administrator will have no issues on this.
45 years Male Attorney
Diagnosed UC October 1989
 
Had two stage J Pouch Surgery Nov 2005; Take Down March 2006
Complications after surgery - Incisional Hernia and Ano Fistulas
 
"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle: Albert Einstein
 
"What you are aware of you are in control of; what you are not aware of is in control of you."
 


BeeSting
Regular Member


Date Joined Nov 2008
Total Posts : 392
   Posted 6/5/2009 12:07 PM (GMT -7)   
Thanks for sharing. This is really interesting!
:-)

LivingWithCrohns
Regular Member


Date Joined Jan 2007
Total Posts : 58
   Posted 4/6/2010 10:15 AM (GMT -7)   
OP, any updates on your health and are you still using the hookworms? Also, where did you receive the worms?
 
31 year old male
Diagnosis: First Symptoms Sept 2001 | Diagnosed with UC in April '03 |Diagnosis changed to Infectious Colitis in Dec '03 | Diagnosis Changed to Crohn's March '04
Meds:  On Asacol 400mg 6x daily | Use Cipro 500mg 2x daily for 7 days when flared |  Trying Lialda now 
Procedures: 
5 colonoscopies to date | no surgeries | 1 hospitalization


grayeyedblonde
Regular Member


Date Joined Jul 2008
Total Posts : 383
   Posted 4/6/2010 11:08 AM (GMT -7)   
After reading up on this it does make sense. I have often felt for a long time that we are "too" clean, but I have to say...Hookworms? Eww!!!
Dx'd w/ Crohn's in 1979 at age 14. Bad flare 2008 but no health insurance so I dealt with it. Colonoscopy in July 2009 caused a perforated colon, emergency bowel resection. 2 fistula's, perianal and perivaginal. 
Dr. wants to try Humira...STILL waiting on that! Not sure what is taking so long...
Currently just take a probiotic, a multivitamin, calcium, magnesium, and fish oil. I also take Tramadol 50 mg and Klonopin (for anxiety) as needed.
 
Life may not be the party we hoped for, but while we are here we might as well dance!


Queen of the Colon
Regular Member


Date Joined Dec 2009
Total Posts : 143
   Posted 4/7/2010 4:42 AM (GMT -7)   
thank you so much for your post

it's an old one so you might not still be around

but if you are, please can you come to the UC board on healingwell and tell us all if there are any trials on now and how they are doing?

i suspect the medical industry is doing limited research because you cannot patent a living organism (a worm) and because they make a lot of money selling drugs to victims of autoimmune diseases like asthma, diabetes, MS and UC/IBD

please let us know what the trials said,

and where can we get infected with worms?
Female, 36. Diagnosed December 2009 after 4 months of pain, blood and mucous.
sulfasalazine prescribed but never taken as my flare went away with small liquid meals, probiotics and vitamins.


7007
Regular Member


Date Joined May 2007
Total Posts : 59
   Posted 4/7/2010 6:35 AM (GMT -7)   
I'm still relying on hookworms for Crohn's, no other medication. I'm in my third year using them now. I got infected with 10 Necator Americanus last February 2009, then added 10 more in September. I think I'll add another 10 soon, as efficacy seem sto wane around the 6 month mark for me.

For over a year now, I've had normal ESR and CRP values. I've gained 30 pounds total since starting hookworms, and kept it on. (I'm actually getting too heavy and have had to cut out the bread and sugar since I can't afford new clothes.) I was really, really sick before trying hookworms, so the improvement has been pretty amazing.

I still go the bathroom at least 3 X a day - mostly soft and solid. I still have mucus between bowel movements. My Crohn's is most active in my descending colon and anus, and the hookworms reside in the small intestine. Human whipworms are used for UC - I may try them later on and see if that helps resolve the activity in the lower regions. Whipworms reside in the ilium and cecum, I believe.

I haven't had a follow up colonoscopy, but my blood inflammatory values were elevated always before, as well as some other values being off. I also was housebound, had chronic pain, and was emaciated, as well as anemic, malnuourished, and failed all available IBD meds.

I got my hookworms through AIT, but they were forced to leave the country by the FDA, and now will not ship to the US. You have to go to Canada or Mexico to get worms. wormtherapy.com sells hookworms in Tijuana, other than that, only TSO is available to your door. I've heard that there will be multi-center trials with TSO in Europe. Right now, there is one TSO study for MS at the U. of Wisconsis, but that is all. TSO is very expensive, but so is the initial purchase of hookworms/whipworms.

I've learned to do McMaster egg counts to track my infection. I plan to learn to incubate them so I can self infect. I've created a website that detailed all of my side effects and experience using hookworms for Crohn's:

www.waitingforthecure.com

I've been dealing with other issues; low magnesium has caused anxiety, insomnia, muscle fascillations, twitches, tics, and I had a miscarriage last fall, and lost a lot of blood. But supplementing with mag is helping, and I am now getting shots twice weekly. I don't know if the worms deplete magnesium, they are supposed to just affect iron, but in greater numbers. I am taking supplemental iron now because of the miscarriage anyway.

There was a recent NPR report on hookworms, as well as much news coverage lately. Because it is an infective live organism, I don't think it will ever be used mainstream, but the U. of Nottingham has done double-blind studies with allergies, asthma, crohn's, and will study MS next. In Australia, they've had a successful celiac trial and will be doing multi-center trials next.

Don't be squeemish; it's not like you know they are in you. It's not like pinworms, which are a nemesis for those who've ever had toddlers. The initial rash and itch are evidence, and you can have bad side effects in the beginning (I had reactive arthritis for 6 weeks at first; subsequent infections are usually WAY easier.) After they've reached your intestine and settled in, you can't tell you have worms, except that you get and stay well, until you lose them, which happened to me the first year; all symptoms came back until I reinfected. I don't know how I lost them; it may have been anasthesia from dental work, but I don't know for sure.

Good luck! I wish I tried this 10 years ago, and not had surgery to remove my descending colon. The science is really leaning in this direction; the hygiene hypothesis proposes our immune systems were shaped with parasites and bacteria - without them we have developed all of these autoimmune diseases and allergies.

Personally, I'd rather be well, eating what I like, and having no pain ,with 20 worms in me, then too grossed out, on Remicade, and still suffering. We all need to get over our prejudice of worms and bacteria - it's what we are meant to be made of. cool

FunGuy
Veteran Member


Date Joined Oct 2009
Total Posts : 1070
   Posted 4/7/2010 8:54 PM (GMT -7)   
bump for reiasmom
 


ReactiveConstellationNE
Regular Member


Date Joined Dec 2005
Total Posts : 256
   Posted 4/20/2010 5:15 PM (GMT -7)   
Fascinating. I'm not quite to that point yet....particularly because I already have long-term chronic ReA which you described as a side effect....making mine worse is the last thing I need! It's hard to say for sure whether my digestive problems are separate from my ReA, related, or if the ReA is directly causing them. So anything which aggravates my immune system is a VERY bad idea for me.

However, if I ever get to the point where I'm looking at lots of nasty meds, surgery, or worse.....I'll definitely give this more consideration.
Conditions: Reactive Arthritis (AKA Reiter Syndrome), Crohn's Disease, Chronic Pelvic Inflammatory Syndrome, Sacroiliitis, Costochondritis, As Yet Unknown MS-Like Relapsing/Remitting Neuropathy, and a partridge in a pear tree.

Medications: Currently not that many are taken daily, but there are many at my disposal for part-time use. Low dose pain medication, after years at high doses. Working on innovative ways of taking lesser-known pharmaceuticals and non-prescription supplements to maximum benefit.


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 4/21/2010 8:49 PM (GMT -7)   
Thanks for sharing! The definition of "normal" tends to vary, so could you let us know what the exact numbers were for the CRP and ESR?

staci100
Regular Member


Date Joined Mar 2006
Total Posts : 111
   Posted 7/30/2010 12:28 PM (GMT -7)   
7007,

I've got a question. I'm getting ready to sign up for hookworms. However, my CD is spread throughout my large intestine and rectum. Will these work for me or will I need the whipworms too and can I get them both together? This is unventured territory for me so I would greatly appreciate your help. Also I am really sick right now. I went off of Humira back in May due to a case of shingles that put me in the hospital. I hate that drug and those like it so I am trying everything I can.
36 y/o Female
Diagnosed with CD 1993

Currently taking Asacol, B-12, Folic Acid, Probiotic, Fish Oil, LDN

Past meds: Humira, Immuran, Robinul, Flagyl, Cipro, Prednisone, Bentyl,

grumpygi
Regular Member


Date Joined May 2010
Total Posts : 266
   Posted 7/30/2010 12:53 PM (GMT -7)   
Hi, I did talk to my GI re this topic in the spring and he was really dismissive.  So here is my question:  do you have to tell your provider what you are doing as it would be perceived as "against medical advice" and secondarily, would one conceivably see these things if you had a colonoscopy?  I told my GI my family were hog farmers in Iowa years ago and would happily return to a farm and muck around in the mud.  He wasn't so impressed.  Whatever!   (probably knows his gravy train would go away . . .)
Meds: Celebrex, Omeprazole, Liadla, Entocort EC 9mg/day, Vit D, Mulitvit, Omega 3's, Ambian, Neurontin.
 
 
 

staci100
Regular Member


Date Joined Mar 2006
Total Posts : 111
   Posted 7/30/2010 2:17 PM (GMT -7)   
grumpygi,

Just reading your post and I am NOT telling my GI what I am doing. He would throw a fit! He's against anything that isn't biologics and I'm guessing b/c of the gravy train idea. I accidentally found a regular physician that approves of hookworm therapy big time! He said that if he had anykind of auto-immune disease that he would have them for sure. Maybe you could look around for someone that would be for it or atleast open to it. Today a dr. told my mom that hookworms would make CD worse. Now, what I want to know is how many patients has he had that have tried hookworms. I am 100% sure the answer is 0!
36 y/o Female
Diagnosed with CD 1993

Currently taking Asacol, B-12, Folic Acid, Probiotic, Fish Oil, LDN

Past meds: Humira, Immuran, Robinul, Flagyl, Cipro, Prednisone, Bentyl,
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