Think I'm going to try hookworms

Mike W, Mexico isn't the only place to get them. The story of that other person from autoimmunetherapies.com is about how he went to Cameroon(Africa) to get them. As the materials posted says, hookworms are parasites and they've been eliminated in the U.S. and other developed coutries for the most part. We aren't walking around in human feces, so these parasites are not prevalent here.

As for not being able to purchase them in the US. Well, it's still being studied. Not many professionals are going to stick their neck out in arguement FOR a parasite. Companies may be a little reluctant to pursue options that involve volutarily infecting people with something that is perceived to be harmful.

I think the reason you can't get them in the US is because you probably can't put a patent on a parasite so there isn't much money in selling them to people.

Regardless, hopefully we continue to get updates from people who have used/are using whipworms or hookworms.

Have you notices that there are over 13K reads on this post and only a few responses. People are interested but leary. Very interesting!

I posted back in early April about my experience using hookworm for Crohn's. I want to share my wonderful news. I just got back from UCSF; I took extensive blood tests 2 days before getting the larvae; I took the same tests 4.5 months afterwards. I am on no medication other than hookworm. The results:

12/14/07 BEFORE:

CRP (< .8 is normal) 5.4
SED rate (0-20 is normal) 31
weight: 137 pounds

4/25/08 AFTER:

CRP 0.9
SED 7
weight: 154 pounds

I am in a state of shock. I have had Crohn's disease for 20 years. I have rectal, ileal-colonic stricturing Crohn's. I have gone to the top medical institutions in the world, and seen the top doctors the entire 20 years. And it's hookworm that works!???!!

A little history: In 2004 I had my descending colon cut out after being on Remicade (and SCD) for one year. It had strictured shut. After surgery, I had a bad reaction to Remicade (herpes, yeast infection, acne, malaise) and I figured I didn't need it any longer. I had one year of total remission. Then I had a miscarriage, was given a D&C and the antibiotic shot Rocephin. I flared badly. For the following 2 years I tried (in order of failures): sulfasalazine, low carb SCD, Custom probiotics, s. boulardii, e. coli nissle, VSL#3, low dose naltrexone, boswellia, turmeric, goat's dairy, new yogurt starter, fasting, accupuncture, Colozal...

Then began the descent into hell. Last May I flared terribly (night sweats, diarrhea, fever, pain, blood) my doctor ordered a colonoscopy; the entire colon and rectum were inflamed, "moderately severe". I had to be hospitalized for dehydration. Started Prednisone 40 mg., for 1 week; I got worse. Now I had diarrhea 10- 15 X a day/night, night sweats nightly, couldn't eat, I got down to 135 pounds. (I'm 5' 11" by the way.) I was bedridden for 2 months. Prednisone 60 mg. for 2 weeks; nothing. My white blood cell count continued to climb, finally took Flagyl which temporarily calmed the flare. One healthy month, one solid bowel movement only. Started Humira, had an allergic reaction (after giving it 2.5 months and my doctor insisting we "give it more time" while I suffered dizziness, night sweats, increasing diarrhea; my CRP tripled). I tried Flagyl, Cipro, Wellbutrin, and Xyfaxin. Nothing worked. My doctor said the only thing left was methotrexate, which has a pretty dismal record, or Prochymal, but I had to wait 90 days to qualify for their trial. I had several partial blockages in my ileum and was fearing surgery. I asked my GI if I should just sign myself into the hospital and live on TPN and his parting words were, "You're not that bad yet." That was last September.

I found TSO but it was blocked importation by the FDA. So I chose hookworm. I contacted Nottingham and interviewed Dr. Pritchard before I made the attempt. I was invited to join their trial, but I couldn't afford to fly to England 6 times. Dr. Pritchard assured me of the hookworm's safety, but was dubious about the Tijuana clinic. So I researched Jasper (the owner of autoimmunetherapies.com); read everything he posted in the past, researched every site, every forum. I wrote privately to two of his patients. My husband searched the email sources and found that the person replying was truly from Australia, etc. I was EXTREMELY skeptical. But he checked out, and I figured I had nothing left to lose. (but my money) I still thought he was a quack, but I was desperate and the more I researched Prochymal, the more I was afraid of trying the first stem cell drug on the market.

I drove to LA, dropped my children off with my mom, parked in old town San Diego, took the trolley to the border and walked across. I stayed at the Hotel Lucerna, met Jasper, took a taxi to the clinic where I met Dr. Llamas (lovely Mexican doctor), took a blood test to rule out anemia (I was borderline), slept in the hotel, and got my "band-aid" (with the microscopic larvae) the next day. I walked back across the border, took the trolley, drove to LA, picked up my children, and drove home.

The irony is they only have band-aid therapies for IBD and finally, a real band aid is what worked.

There are 3 places currently to get hookworm: I just called U. of Nottingham and they have 13 slots left for their Crohn's disease trial. They are eager to finish the trial and publish their results; they are blown away by what 10 hookworm are doing to the T reg. cells. They will allow any country to participate, but you must go 6 times for blood tests over 6 months, and it is double blind placebo. However, I have had heard that several of their participants got to keep the worms. They might give them to you if you get placebo and beg hard enough when the study's over.
An ulcerative colitis study will be starting in 6 months. Their contact email: [email protected] (tell your English friends so this study can be completed and published; this is the only real way it is going to gain publicity and acceptance.) Or you can pay for them at www.autoimmunetherapies.com Or you can get them for free in South American jungles.

My doctor recommended I write an article in the CCFA newsletter. He emailed the coordinator for "Rumblings" and CC'ed me the email. This is what he wrote:

"Debora Wade is a patient of mine and she has a pretty amazing story of successful CD treatment that I think would be worth sharing with our local IBD community. Can you connect her with the person now in charge of Rumblings. Debora could contribute a short article and I think it would be enlightening and entertaining.

Bottom line is that Debora had CD refractory to drugs like Humira and she put herself in remission by having herself infected with hookworm!! It did truly work...

Jonathan
Jonathan P. Terdiman, MD
Associate Professor of Clinical Medicine and Surgery
University of California, San Francisco"

So I am not making this up. I am using my name (and his) since I believe that this therapy is the safest thing available for Crohn's. There are not side effects like death and lymphoma. You don't have to keep drinking ova like TSO, and I think the numbers needed for remission are low. Jasper created the multiple stage protocol for me because I feared a stricture (this has resolved, so I guess it was inflammation after all, thank God); I started with 10, and added 15 larvae over time, so I now have about 25. The average New Guinean worm load (where the Nottingham worms are from) is 20. Nottingham is using 10. 800 million humans are infected with hookworm, and most of the symptoms are subclinical until the numbers get too high. Then it can be devastating, which is why hookworm is considered such a menace. There are no long term studies on people with autoimmune disease putting their diseases into remission with hookworm. We don't know who it will work for, if it will keep working, if certain things could make it stop working, etc. But as there are no dangers of Necator Americanus besides anemia (at numbers over 300), what is the risk in trying?

You can control the population, unlike endemic areas of infection where people are continually stepping on their own feces and reinfecting themselves with 1000's of worms daily. Infections remain subclinical until well into the 100's. The worms do not reproduce inside the body. They require an outside incubation period with specific temperature and humidity in the soil. You cannot infect your friends or family. You only have as many worms as you choose. The whole process is bizarre, but really, how normal is it to be hooked up to Remicade? We've got to get used to the fact that bacteria and parasites are living in us, daily. My eosonophil (blood reading that measures helminthic infection in the blood) doubled after hookworm, but is well below the normal range, so you cannot even tell I have parasites by a blood test. You can't see them on a colonoscopy, since they reside in the small intestine.

I haven't told anyone but my closest friends, though. I can never tell my father, as he is a germaphobe and will probably never touch me again. It is a lonely therapy.

I did not have an easy time going through the inflammatory period, post inoculation, which lasted until about week 10. You can read my weekly posts on the autoimmunetherapies forum from day 1; (http://health.groups.yahoo.com/group/helminthictherapy/) Most people trying this for other autoimmune diseases do not suffer badly, if at all. I was autoimmunetherapies' most reactive patient to the lowest number of worms. I got arthritis from weeks 3-10. Some people react with nothing but fatigue. The hard part is there is no way of knowing how you're going to react. It's still all a big mystery how they work. Google hookworm and autoimmune and start reading.

Nottingham wants to develop a medicine that mimics hookworm's effect, not give hookworm to the masses. But I think it is criminal that we do not know about it or it is not being studied extensively in the meantime. I think it is so bizarre and off putting for most, and more importantly, it is not a drug, no one can patent a hookworm, and I suppose if someone were to crap in a bucket and incubate the larvae correctly, they could infect other people. Most doctors are dubious. The hygiene hypothesis is growing in acceptance and momentum, but it is still that; a hypothesis. Enough of us need to try hookworm and claim efficacy. Then perhaps we could wait enough years to prove long lasting remission, kill the hookworms, and see if our diseases come back. Isn't this how they figured out h. pylori causes stomach ulcers?

If I could be put in remission so effectively, and I am on no other medicine so I have not perverted my results, then many others should have similar effects. Note I am allergic to 6MP (well, it gave me severe nuetropenia and I almost died; I'm not sure it was an allergy as a severe side effect), I can't take Remicade or Humira, Prochymal now seems to be short acting, if it works. The 5 ASA's are worthless. And it's some worms that did it???

I am incredulous at the audacity of this treatment. Yet shooting myself with Humira every 2 weeks - it hurt - I'd get dizzy, and night sweats, and every time I felt like I was putting a poison into my body...I feared cancer with every shot. Pulling a band aid off is nothing compared to giving yourself a shot of Humira.

Now I've got 25 benign little worms, that have lived with humans for 100's of 1000's of years. And I have to do NOTHING. I have to swallow NO PILLS. NO SHOTS! NO INFUSIONS. Nothing!! The hookworms will live for the next 5 - 18 years, so I will probably start adding again at 4.5 years. And perhaps THAT IS ALL. Having lived with the specter of this nightmare disease haunting me for 20 years, and I have been ruthlessly searching for a cure the entire time; I still cannot imagine that I may be done. I will not trust this for many months, possibly many years. Even then, I will probably forever live in fear of impending doom.

So far so good though. No inflammation feels nice. I am still sensitive to fiber and am tired (though I have very, very low iron; I had that before hookworm and need to address it; the hookworm has lowered it marginally.) I had solid stools by week 16, but I added more worms then and think I am still reacting, since I've been nauseous and have had looser stools since. But with no inflammation, I don't fear it anymore. I am eating Thai food as I write. I had toast for breakfast, and chocolate. I haven't had these things in 7 years. I am at week 20.

I'm sorry this is such a novel, but I feel obliged to share my story. We need to rise up and spread this information to the entire IBD community, not to mention other autoimmune diseases. If it can be as easy as a few worms, my God!! Have I suffered most of my life, ruined my career prospects, been incredibly sick for most of my 20's, half of my 30's, lost 1/3 of my colon, almost lost my first child during pregnancy because of Crohn's, flared horribly after both pregnancies and never got to be a healthy mom, etc....and this is what works??? I keep oscillating between extreme giddiness and sobbing, reckless despair, but I will try to withhold my anger and direct it at mass education.

Anyone have ideas as to how to spread the word? I hope this works for others, and many of you give it a try. Come join the hookworm club. ;)

You can email me personally if you have more questions; I'll try to check back more often on this forum.

Debora
[email protected]

Looks like you have really been doing your research. Again, why do you have to travel to Mexico to get them? What is the cost?

Hi Crohn'snme,

The clinic Debora is referring to is in Mexico. Hookworm are considered an infectious disease agent in the U.S. and you need a special permit to even do research work on them. Interesting, I've read many studies that characterize how hookworm really do modify our gut's immune system so they can live. Its like rehabing or redecorating a new house so it will be livable. They change your bodies immune system so it doesn't see them -- they blind the immune system. CD is about our bodies seeing something in our guts that it doesn't like -- so it attacks. The immune system 'blindess' caused by the worms also causes blindness to the CD irritant. Sounds like the worms give our immune system chill out pills! I would like ot have a mellow immune system rather than one that attacks me!!!

As Debora said, it is difficult to get them unless you use the ground instead of a toilet and then walk around in you bare feet. Using toilets and wearing shoes is what the Hygiene Hypothesis claims has resulted in our lack of hookworm. But governments still have eradication programs, so Doctors trying to administer hookworms would probably loose their liscence.

Why don't you check out the clinic's website -- autoimmunetherapies.com? They offer two administration plans depending on if you want to get the full number of worms all at once or in two visits. I think the full dose/one visit is $3,900. Which is way cheaper than TSO (porcine whipworm) and as Debora says, they live many years.

I understand that we all respond differently to treatments but I believe that (as shown at www.lowdosenaltrexone.org) tissue repair IS possible with Low Dose Naltrexone (LDN).  Therefore, remission should be inevitable.  I am hopeful……

 

Personally, I have been ill most of my life (30 years) and have responded VERY WELL to LDN!  I am due for testing in July and will compare the results to (before LDN).  I can “feel” improvement (loss of inflammation – loss of pain – relief from symptoms) and I am able to eat without experiencing the agony!

 

I can’t believe what a difference LDN has made in my life and I only wish that others would benefit as well as I have!  It is definitely worth a try since it is inexpensive, 1 pill at bedtime, minimal to NO side effects, and it WORKS! 

 

I wish you well….

 

Kindest regards,

Patti

 

does anyone know if the TSO worm therapy is taken on an emtpy stomach?  how long to wait to eat food? 

Natwell this post is from 2008. Our membership turns over pretty quick, so these members might not even be on the forum anymore.