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I’m going to take a break from blogging for the summer.  I just want to have some time away from thinking about worm therapy, and need to give the new things I’m doing some time to assess before writing about them.  I’ll still take comments and answer questions, so keep ’em coming.

My action plan:

15 new hookworms

SCDiet (mostly)

l.glutamine/l.arginine 4 g/1g

reservetrol 150 mg.

Udo’s Choice Super Bifido Plus probiotic (2 caps a day, working up to more) +

Udo’s Choice  Super 8 Hi-Potency Probiotic (1 cap a day, working up)

Fish oil: 3000 mg EPA/DHA (Nordic Naturals Ultimate Omega)

Vit D: 7000 – 10,000 IU a day

Magnesium glycinate 350 mg. (about all I tolerate before getting loose stools)

magnesium chloride baths: 2 a day (this is helping with the magnesium deficiency symptoms, thank God!!)

multi vitamin + extra Vit A (since I am low in this)

meditation (1 -2 X a day), lots of sun, exercise, and prayer

I had an MR enterography done recently.  It showed mild inflammation in the ileal-cecal valve with minor scarring, a very inflamed sigmoid colon, and my first ever fistula, going from the colon to an ovary.  Very disappointing.  So though the hookworms have helped fabulously, the wait to reinfect (I went 9 months this time) led to some pretty bad inflammation.  My GI said the entire wall had eroded through, which is what led to the fistula.

Whipworms may help more, but AIT decided not to offer them to me due to anger about some of these blog contents.  I may get access to them from another source down the road.  But for now, hopefully the above plan will help things heal.  Enjoying the summer bounty, the fruits of my trees in strict moderation, unfortunately (will a summer ever come where I can eat my plums with abandon?)

I hope everyone else has a much easier time with helminth therapy.  It has not been a fun road for me, though I am grateful for the opportunity in trying them.  Hopefully good days are to come.

May all of you with Crohn’s find relief.  Here’s a prayer for your suffering: may you find what you need to get well.  May you live pain free and free from fear.  May your meals be joyous and deprivation be an unknown concept.

Finally, please pray for all of those people suffering terribly from this disease. I am not that religious, but prayer has been shown to work, and it’s cheap and easy!  For everyone who reads this, send a silent vision of wellness for humanity.  May we all return to a perfect state, and send our suffering to the wind, to be whispered then forgotten.  Peace to all.

Here’s a new article from the University of Manchester, finding worms are a key part of a well orchestrated immune system.  Is it just me, or are you getting a little tired of the avalanche of proof while we wait patiently suffering, unable to afford or receive our worms?    We want worms and we want them NOW.

http://www.the-scientist.com/blog/display/57492/#ixzz0r7JuTFKP

http://www.manchester.ac.uk/aboutus/news/display/?id=5841

From the articles:

“A new class of organisms may be cutting in on the classic, co-evolutionary, immune system-boosting tango between mammals and the beneficial bacteria that inhabit their guts: parasitic worms.”

Trichuris muris eggs with Escherichia coli
Image courtesy of Kelly Hayes, University of
Manchester

“Importantly, the work also showed that the presence of worms and bacteria altered the immune responses in a way that is likely to protect ourselves, the bacteria and the worms.

Intestinal roundworm parasites are one of the most common types of infection worldwide, although in humans increased hygiene has reduced infection in many countries. High level infections by these parasites can cause disease, but the natural situation is the presence of relatively low levels of infection. The team’s work suggests that in addition to bacterial microflora, the natural state of affairs of our intestines may well be the presence of larger organisms, the parasitic roundworms, and that complex and subtle interactions between these different types of organism have evolved to provide an efficient and beneficial ecosystem for all concerned.

Professor Roberts says: “The host uses its immune system to regulate the damage caused by the bacteria and the worms. If the pathogens are missing, the immune system may not give the right response.”

Professor Grencis adds: “The gut and its inhabitants should be considered a complex ecosystem, not only involving bacteria but also parasites, not just sitting together but interacting.”

It’s been 2.5 years now that  I’ve been playing with hookworms.  It’s been a very exciting and trying journey.  When I began, my choices were TSO (trichuris suis ova, or  pig whipworms), or a trial for hookworms at the University of Nottingham.  I chose TSO, but the FDA had blocked importation of it temporarily, and I wasn’t going to get any for several months.  I contacted Nottingham, and they would take me as a patient, but I had to travel to England 6 times and I had 50% chance of a placebo, and they only gave you 10 worms, and if it worked, they weren’t allowed to give you any more if you needed them. Read the rest of this entry »

Worsening

It is now 8 months since my last infection with 10 hookworm larvae, and I am steadily going downhill.  Now pain is a constant, I saw blood yesterday for the first time, I’m going to the bathroom a minimum of 5 X a day, mostly loose or diarrhea, and I’m nauseous on and off, have very little appetite, and have now lost 10 pounds.  Can I just say I hate this disease?

I did another egg count, and had plenty of eggs, in fact, the same that I’ve had since about 6 weeks from the last dose, so my regression is not due to a drop in egg production, or worms dying.   Perhaps some male worms died, but the females are laying as strong as ever, so I don’t know what the hell is going on, except the theory that Crohn’s needs more frequent stimulation, and that the infection itself, or the new worms are part of the necessary immune stimulus.

I am bolstered by the eggs in my stool, however.  Whatever it means.

I know the worms help, and I’m hoping another dose of 10 or so will get me back to a good place for a while.

When I first started this blog, my intention was to log my journey with hookworms, and I apologize for how up and down the whole thing has been, but that’s the way it’s gone.  I haven’t ever reached remission in terms of symptoms, but I’ve reached pain free living (which is why it’s been so hard to have pain again for the last few months!), and certain things have gotten incredibly better, while other things have gotten worse.

Anyway, I still encourage everyone to try this, but the expectation that you will only have to infect once every 3-5 years is probably unrealistic.  I’ve been in touch with at least 5 Crohn’s patients who maybe get to the one year mark, then have to reinfect.  Human whipworms seem successful for the very few UC’ers who’ve responded on the yahoo forum, but the data is scant.  The research is overwhelming, but the human trials haven’t yet proven anything, and nor have I.

I’m back on the Specific Carbohydrate Diet, with lots of probiotics and I’m just trying to hang in there until I find a safe new worm source.

I’m performing as a bassist in a band on Saturday, and it really sucks how sick I feel.  A pad in my underwear to catch the drip, some Immodium, but God it sucks trying to live your life when you are ill, and though I have 22 years of experience, it never gets easier.

I did another egg count; my old way (which I now realize is wrong) was to count all the eggs I saw, whether in the grid or not.   This egg count = 1300 epg, which is similar to what I’ve been getting since reinfecting with 10 hookworms last September.  The bad news, is the egg count hasn’t gone down at all, so my regression isn’t due to any worms dying, or loss of fecundity.

But I did a much more thorough microscope evaluation this time, and 12 of those eggs were out of the grid.  So my real egg count would be 700 epg.  Which makes a lot more sense worm-wise, since I’ve been wondering how my egg count could be so high for such a small amount of worms.

The Nottingham allergy trial gave everyone 10 hookworms and did quantitative egg count in all 15 participants.  2 didn’t show an egg count at all, and the other 13 had from 90 – 200 epg.  Another study, which followed one person infected with 5 parasites over the course of 17 years, estimated that the average egg count for a single adult female in the prime of her life was 50 epg.  So a count of 700 epg would assume 14 females.  My first counts of 800 epg after the initial 10 worms could have been more like 400 – 500 epg depending on how many eggs were out of the grid.  So I may have gotten a disproportionate amount of females, or this is just the margin of error involved in the process.  I know egg count isn’t definitive of population, since the egg output is supposed to peak at 6 months, and decline more significantly after a year of so.  Also, many texts I’ve read said that Necator lives an average of 2 years, but can live up to 17, but most likely, every year, worms are dying or just moving into middle age.  Do female worms go into menopause and stop egg laying?  Does it matter?

A light infection is considered < 2000 epg.  I was getting a little concerned, when I was getting 1400 epg, thinking, God, I’m going to move into a medium intensity infection, which is where the iron deficiencies usually strike, and since I’m already dealing with iron and magnesium deficincies, what’s it going to be like adding more worms?  Both times last year, my Crohn’s improved while my mineral deficincies got worse, but the first time, I got a series of iron shots that probably threw the low magnesium even lower, and the second time, I got pregnant, which also uses up a larger amount of minerals.  Of course, then the miscarriage, so I’m limping along trying to up my mineral consumption, while still losing it from diarrhea and menstruation every month.

But I feel bolstered that I have plenty room to add and will still be in the low intensity infection range.  But I wonder, for those getting 50 worms, what their egg count would be?  25 females would be about 1250 epg, so it would still be in the low intensity infection range.  And I wonder if we need a medium intensity infection to stay in remission?  Would I not have these drops of efficacy if I hosted a higher number of worms?

Oh God, too many unanswered questions.  I wish I knew the protocol that would work the best and leave me suffering the least.

Back to the microscope, hoping I can put myself out of my misery soon.

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