studies

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The Plan

I tried coming off the antibiotics a few weeks ago, and 5 days later, things were starting to regress and I was very nauseous, started getting up at night again to use the bathroom.  So my doctor said to go back on them until I find something else to get off of them with.  Sigh.

So I started the GAPS diet which is basically SCD but with much more emphasis on probiotics.  You’re supposed to drink lots of bone broth between meals, make veggie juices, and stick with mostly meat, vegetables, and some fruits.  Later, you can add nut flour products.  You’re encouraged to start adding probiotic foods (saurkraut, kefir, yogurt) slowly until you build up to eating probiotics with every meal. The first few days were hard, as I was craving chocolate and fruit, but those have gone away and I’ve settled in for the long hall.  My friend gave me some nettles, so I’ve been juicing those and made some tea to try to increase my nutrition.

I’m getting all my gear to try a fecal transfusion enema.  The procedure is mainly used for c. difficile, and  has a high cure rate, even after repeated rounds of antibiotics have failed.  It’s used less so for IBS and IBD.  I figure it’s worth a try, and may be a way to repopulate my colon with appropriate flora.   I once had a colonoscopy that looked like a c. difficile  infection, but tests were negative.  Flagyl stopped my flare in its tracks, within a few days I had a solid bowel movement after having diarrhea forever.   I’ve since learned that there are over 150 species of clostridia, but they only test for 2 I believe.  Every stool test I’ve sent to a place like Great Smokies showed absolutely no beneficial flora, and an overgrowth of various things like klepsiella.  This study shows that after 2 weeks of a single infusion (I believe), the recipient’s colonic flora was very similar to the donor’s.  Although in the murine model, this study showed that there was less success after antibiotics in repopulating the microbiome, but that just tells me I’ll have to do it a few rounds, probably not just one week.

Another avenue I’m exploring is buproprion (generic for Wellbutrin).  This study showed in the murine model, that buproprion profoundly lowered TNF alpha.  Another study was done with psoriasis patients, and many of them had lowered plaque levels after 6 weeks on the drug, and one who elected to stay on it had the effects last 3 months, another was still well 19 months later.  There was a thread on healingwell of one parent whose daughter did well on it alone for 7 years, apparently there are a few others.  I don’t like being on antidepressants, but I’m already on 10 mg. of Celexa, which seems to be doing nothing, so I figured I’d switch.  I’m three days in, took 100 mg. the first day and 150 the second.  Getting a little wired and twitchy, so I’ll sit with this dose for at least a week before adding.

And if all that doesn’t work, it’s either Prochymal or Cimzia.

I still have worms, but they’re not supposed to work when you’re on antibiotics.  But if I flare off of the antibioitcs, are they enough?  I’m not as enamored of the worms as in the past, since this year has been hell and I haven’t had a fistula or abscess in over 23 years (and then, it was a rectal abscess not a fistula).  I think it had to do with using Prednisone to manage the side effects, and the dismal TSO experiment.

It’s been quiet in the worm world.  I never got a refund from AIT.  Jasper said the middle of March.   I wasn’t expecting anything, but gave my paypal information, was told that he was going to wait a few weeks.  We’ll see if anything comes….

Husband has worms.  Found them in my last egg count.  But he ate some walnuts a few weeks ago and had a mouth reaction, so no oral benefit.  Didn’t have that many eggs either, but I’m going to repeat since both of us had a lot of fiber in the way, and I didn’t stir the stool as well with the salt water as I normally do.  (I had to wait hours, and both of our solid bowel movements had hardened.

What do you think of my plan?

Many articles came out today about the case study of a man with ulcerative colitis who used human whipworms  (trichuris trichiura) as therapy for UC, with colonoscopy samples to supply information on inflammatory pathways and mucus secretion in relation to these helminths:

http://www.livescience.com/health/worm-therapy-stimulates-gut-mucus-101201.html

http://www.baltimoresun.com/health/la-heb-worm-healing-20101201,0,2645483.story

http://discussions.latimes.com/20/lanews/la-heb-worm-healing-20101201/10

From Scientific American: http://www.scientificamerican.com/article.cfm?id=helminthic-therapy-mucus

For the Good of the Gut: Can Parasitic Worms Treat Autoimmune Diseases?

Helminths could suppress immune disorders by promoting healthy mucus production in the intestine

By Ferris Jabr December 1, 2010

human-whipworm-eggs PROPITIOUS PARASITE: Human whipworm (Trichuris trichiura) eggs from a patient who deliberately infected himself with parasitic worms to treat his ulcerative colitis, an inflammatory bowel disease. The worms may have sent his sent his disease into remission. Image: Kimberley Evason, UCSF Read the rest of this entry »

My slides:

http://openetherpad.org/deborawade-bter-slides

My talk:  (numbers in parentheses are the slides)
(1)My name is Debora Wade and I have had Crohn’s disease for over 20 years.  Since December of 2007 I have been experimenting with helmitherapy.  In other words, (2)I have approximately 15 of these hookworms living in my small intestine as I speak. Read the rest of this entry »

http://evmedreview.com/?p=457

The light of evolution points toward reconstitution of the biome as the only reasonable therapy for a wide range of immune-associated disorders, including allergy, autoimmunity and perhaps autism.

By William Parker, Duke University

It is now widely appreciated that humans did not evolve as a single species, but rather that humans and the microbiomes associated with us have co-evolved as a “super-organism”, and that our evolution as a species and the evolution of our associated microbiomes have always been intertwined. This co-evolution has biological consequences that are readily apparent. For example, decades of work with gnotobiotic (microbe-free) animals consistently demonstrate that the painstaking separation of a mammal from its associated microbiome results in an underdeveloped immune system that is a mere shadow of its naturally occurring counterpart.

The vital role of the microbiome in shaping the development of the immune system is, thankfully, becoming widely appreciated and the subject of more intensive inquiry. On the other hand, it is less well appreciated that, like the microbiome, a wide range of our fellow eukaryotes have co-evolved with us and have become intertwined with the development of our immune system. All mammalian species with the exception of humans in post-industrial societies and their domesticated animals co-exist with a wide range of intestinal worms, called helminths. Unfortunately, we are only now beginning to appreciate the consequences of our deceptively painless separation from these animals. Read the rest of this entry »

International Conference on Biotherapy - 2010

November 11-14 in Los Angeles, the BTeR Foundation (BioTherapeutics, Education & Research Foundation) is hosting an international conference on biotherapy, including helmintherapy:

http://www.bterfoundation.org/icb/icb2010.htm

Dr. Pritchard from University of Nottingham will be giving a talk:  “A Critical Appraisal of Worm Therapy” on the 11th, and on the 14th will be having a workshop on “Practical Helmintherapy”.

http://www.bterfoundation.org/icb/program.htm

I’ve been invited to speak as a patient trying this therapy.

I’d like to present an honest account of my and other people’s experience with helmintherapy.  Mostly, I’d like to establish a liaison between patients and researchers.  What would you, as a potential or current patient of helmintherapy like to tell or ask the researchers?  What has your experience been with your disease and helminths?  What would you like to see in the future with this therapy?  Are you interested in becoming a case study or linking your physicians with other researchers?  How can we best unite the community of researchers and the “underground worm therapy” movement to help legitimize and share our data?

You can comment here, or privately at: http://waitingforthecure.com/I/contact/

Thank you!

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