November 11-14 at the Hollywood Hilton in Los Angeles, there will be a conference on biotherapy, which is the use of living organisms to treat or diagnose medical illnesses.  On Thursday at 4:00 Dr. Pritchard from the University of Nottingham will be giving a talk on helminth therapy.  On Sunday, there will be a breakout session and workshop at 9:00 AM on the Clinical Use & Administration of Medicinal Helminths.  Those of you interested in learning more about these topics should attend.  Price for the day is $175 or $105 for students,  a workshop only is $235 or $105 students.  All 4 days costs $425 / $190 students.  Members of the BTeR foundation pay less.

I’m planning on attending this.  Hopefully some of our burning questions will be answered.  Maybe those interested in helminth therapy in the Los Angeles area could meet somewhere to talk about it?  A worm date.

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.

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.”

Then I stumbled on AIT, a private company selling hookworms.  I was skeptical of their business operation, and tried to contact multiple people who had tried the worms through them, but they had just opened up the clinic a few months before, so I only read one online account of a patient with asthma and allergies that had remarkable relief, and finally, one of the clients from Australia wrote to me that it was legit, and they had indeed receieved hookworms, though it was too soon to notice benefit.

I asked for blood tests to prove the resevoir donors weren’t infected with the typical nasties, took my credit card and my hope to Tijuana, and got to meet Jasper and Dr. Llamas, and took the plunge.  It’s all detailed in this blog.

The thought was, just get through the initial side effects, and if the worms were going to work, then I’d be good for as long as they stayed alive.  It was really, really hard to suffer the initial side effects (oedema in my ankles, reactive arthritis, increased diarrhea), but several months in, I started to get better, and it was very exciting.  Finally, I had found something that worked!  But we decided to experiment on me, and I tried weekly doses of 2 or 3 worms, and everything went to hell.  Better by month 4, then increasingly worse as the months went on.

It took months to figure out that I had somehow lost my worms.  During that time, there were a lot of questions, emotions, and unfortunately, fighting behind the scenes between the worm providers and me.  It was horribly stressful, and here was this thing that held so much promise, but was governed by personalities that were extremely difficult.  But we managed to work through it, and I was finally offered more worms for relief.

I  got to reinfect last February with 10 more hookworms, and I started to improve again.  But I did iron shots at that time, since I was so iron deficient from the years of Crohn’s, and I developed nueropathic symptoms that no one could figure out.  An MRI and a full work-up at the UCSF neurology center revealed nothing, and I was sent on my way to see if it was the iron, the worms, or a new disease that was developing.  It was extremely scarey.

The nuerological symptoms faded somewhat, but what emerged was anxiety, insomnia, and horrible PMS every month.  I endured this for several months, and started having constant muscle twitching, charlie horses, and the numb hands, tingly lips, and feeling just kind of out of my body continued.  I started having intense night sweats before my menses.

The Crohn’s never got to a point where I had solid bowel movements every day.  I made the mistake of abandoning my diet (SCD) pretty early on in the therapy, and though I tolerated the foods somewhat, this might have been the cause of some of my demise.  I went back on the diet for several weeks when things would worsen, but having opened up the Pandora’s box of being able to eat at social engagements and restaurants again was too much to turn away from.

But by last summer, the Crohn’s was worsening, more diarrhea and mucus, and finally, after a particularly hellatious PMS, I redosed with 10 more worms to see if that would help everything.  I also got pregnant that week, and the next few weeks I had increased diarrhea, the nueropathy got way worse, and then I got the positive pregnancy test, something I had wished for for years, but the hormonal imbalance became extreme, and my pregnancy was met with total insomnia – I only slept for a few hours each night, and the anxiety and depression went through the roof.

I meditated daily, I had been working with a pyschologist for months.  The fear of the unknown, and working with a worm provider that I had constant conflict with, who could deny me my “medicine” at any time, was not comforting.  I had this blog, which was attracting a lot of attention and support, and I read many reports of people doing great on the worms, just one dose, a few months of side effects perhaps, if they got anything, then they were well!  I went into this thinking that was what my experience was going to be; I didn’t think that I’d only get a few months’ relief each time, and I certainly didn’t expect other things to decline.  But the worms still held so much hope, and I had a normal CRP every month, which was confirmation of their efficacy, and proof that the worms worked to curb inflammation well.

I took egg counts all last year, since I was paranoid that I was going to lose my worms again.  It seemed to me a good way to track the rate of egg laying, and short of a camera endoscopy, the only way to keep track of the population.  My egg counts didn’t seem to decline much with the decline in efficacy, but I had such a low worm burden, it seemed prudent to try adding, and it did work each time last year within a month to take the pain and inflammation down.

The pregnancy wasn’t sound, and I had to wait 5 weeks for a natural miscarriage, since the meds they use  to induce abortion  are contraindicated in Crohn’s, and I had already had a D&C 4 years ago, which required an antibiotic, which flared me horribly at the time, so I was trying to avoid that option.  The anxiety and depression finally was improving a bit with an SSRI, and I miscarried dramatically, but had one piece of tissue left over for a month, so bled and bled, until finally they fished it out and I was done, albeit extremely iron deficient.

The anxiety came back with my first period, and is a constant friend every month, despite everything that I’m doing to help it.  I’m just getting better at managing the symptoms, and meditate, cry, and know I’ll feel better in a few weeks, but it’s still pretty miserable.

The Crohn’s started to worsen again in early Spring.  In March of this year, my CRP started to rise, just a point above normal, but I felt it.  My ilium was starting to be inflamed again, and I was getting nauseous.  I went back on a stricter diet.  I finally was diagnosed with low magnesium, and we tried a series of shots, supplements, and transdermal mag, but after a month, my symptoms were worse, and there was no improvement in the red blood cell magnesium test, so we abandoned the shots.

Meanwhile, AIT had been raided by the FDA, and there were a few months that no one could get worms anymore.  I started to research incubation, and my egg count was staying high, but my Crohn’s was getting worse.

Finally, AIT was shipping again, but one had to travel to Canada or Mexico.  I was thinking of adding whipworms to see if that would help the colonic and anal symptoms (mucus, “wet farts”, still going to the bathroom 3-5 times a day), and I was thinking I could just up my hookworm population myself.

Then, comments on this blog, and our contentious history,  caused AIT to deny me whipworms and whether they would provide me more hookworms was in discussion.  While waiting to hear back what worms I could receive, if any, my incubation failures stacked one week on top of another, and every week of failure brought a further worsening.  Meanwhile, my phyiscian gave up on my magnesium issues, sending me to an encologist, who tried a few things, then also gave up, and yesterday I visited a new gastroentrologist for advice.

So I’m back to where I started 2.5 years ago.  My CRP is again higher then last month; it’s almost up to where it was before I started the worms.  I’m still at a higher weight, but have lost about 9 pounds now in the last 2 months.  The neuropathy is still there, it ebbs and flows.  I’m waiting on another red blood cell magnesium test, but it seems the shots, supplements, transdermal applications, which I’ve spent 100′s of dollars on, are all in vain.  Luckily, my iron has been rising, so I’m absorbing iron supplements without issue.  I don’t know why the magnesium won’t resolve.

So, I have TSO again, and it’s available now.  It costs about $10,000 a year.  There are three other companies that are selling hookworms; wormtherapy, to which one must go to Tijuana and pay $2200, immunologica in Spain, and the last I checked one must be a Spanish resident, or wormfriends.net, which is a brand-new operation with about 5 customers, and they ship to Canada or Mexico, but no guarantees of anything.

I used a credit card for the $7,800 I payed for my worms from AIT.  I later rolled that into my home equity line of credit, so I’ve been paying interest on that for a couple of years.  Soon after the market crash, my credit cards were reduced to 0 and my home equity reduced to the amount I owe.  So I have no funds anymore to start over.  I suppose I could borrow money from friends or family, but my family has issues over money, and my siblings and I have never asked for financial help, and it is very difficult to do so.  But that option is there, but emotionally painful.

So now I face the difficult decision of borrowing enormous amounts of money to try TSO, start over again with another hookworm provider, or keep illegally trying to incubate my own worms, without knowing what I’m doing wrong, knowing each week I don’t succeed is more scar tissue build up in my ilium, more suffering, etc.  Though I kind of like doing McMaster egg counts, there has been no enjoyment in the other process, and I don’t want to be doing it at all.

I went to a new gastro yesterday in San Francisco, and we did some celiac tests.  He wants to do an MRI endoscopy, a non-invasive method of looking at the intestines.  He felt my ilium and the scar tissue, he also felt the descending colon’s inflammation.  We’re doing a stool test that is more accurate then CRP to asses mucosal inflammation.  He’s going to call Dr. Weinstock for me to see if anyone else can help me with my worm problems.

I’m back on my diet, going to add more fish oils, turmeric (supposed to help tighten the bowel leakage, along with being a good natural anti-inflammatory), I’ve been on Celexa since December, which helps, but not with the PMS anxiety/depression, which is like a monster every month, just dealing with the pounding heart, the night sweats, the depletion, the hopelessness.  I’m taking magnesium, but it’s not helping.  I’ve learned to get by in life with constant twitching, feelings of anxiety on and off, bowel problems, etc.  I’m still stronger than when I started, but that feeling of the unknown is just horrible.

Will the worms continue to work for me, or is my immune system overriding them?  Do I need to dose every 6 months to prevent this from happening, and how many worms should I dose with? Is my improvement/regression due to not enough worms, would it not happen if I tried more?  Should I abandon the hookworms and switch to TSO?  Should I terminate the ones I have in order to break the contract with AIT, or should I just wait for them to die of old age?  Should I persevere with my own scientific experiments, even if it means waiting weeks or possibly more months before I get relief?  Will I get relief?  Will the perimenopause continue to worsen?  Should I go on another medication to handle the anxiety?  Will I ever up my magnesium, or must I deal with these symptoms forever?

I had such hopes for these worms, and I still think they are valuable.  It’s just so difficult to procure them, one must watch what they say or speak, they are illegal in the US,  and there are so few options, most of them cost prohibitive.

It’s like the line onto a roller coaster, where you go back and forth, around and around, closer to your goal, but never actually being able to reach it.  I know there is some combination of worms, probiotics, diet, herbs, but I haven’t managed to find it, and today, I just feel like giving up, crawling into the ocean, and joining the tides that wash over us, lapping the surface with chaotic regularity.

Another day in the life of the worm experiment.  Back to the microscope, back to the intro diet, I must carry on.  I’m sorry for those reading this, I think most people are not having such a trying time, but the few people who write into the yahoo forum don’t often ever write again, so I have no idea who this is working for long term.

I wish I could get immediate relief.  I wish I had safe and easy access to the worms at any time.  I wish it were just all simpler.

My last 2 incubation attempts have been fruitless.  Only the first sample with tap water was successful, and by successful I mean there were a total of 5 active larvae; the rest were immature and dead, or mature and dead.  While trying to pick up 2 of the larvae, they stopped moving, and seemed to die, since nothing, poking or wiggling, revived them.

I managed to pick up a few larvae and pipette them into a petri dish.  I gave myself two, but didn’t really feel any skin penetration.  I thought I felt better for a few days, but it was also when I was ovulating, so it could have been that.  The next sample I used spring water, and there were only dead worms.  The third, with distilled water, had no worms at all.  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 often 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.  I will figure this out.  I have one petri dish with just vermiculite and distilled water in it, to help determine if the thousands of one celled organisms that look a little like protists, or cilliates, are from vermiculite contamination.  I have another stool sample mixed with just sand and distilled water.  Then a third, with tap water, vermiculite and stool, since this was the only sample so far that yielded live and wriggling larvae.

Each week of failure is another week of misery.  But 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.

I have been so harshly criticized for this blog that I considered taking it down at one point, but then I’ll get other messages from people thanking me so much for my information, that I continue.  The community that is now forming of people wanting to do this themselves is so valuable.  Jasper has done an enormous service for people, both in offering the worms and getting the publicity out there, but people rightly want to independently infect themselves, and now there is a wiki just formed on helminth therapy that you all should help contribute to.  I’ve had several people respond to the Bay Area Support Group idea, and we are helping one another with incubation, egg counting and harvesting techniques behind the scenes, which is incredible.

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 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.  I have heard that wormtherapy now offers human whipworms, so there are now multiple sources for either worm.

Anyone with incubation tips, please send them my way.  I’m back on the Specific Carbohydrate Diet, with lots of probiotics and I’m just trying to hang in there until I get some success in the laboratory.  If  a few weeks go by and I still haven’t managed to isolate infective larvae, I may have to borrow some money and purchase a new set of worms, but I’ll cross that bridge when I get to it.

I’ve got a huge performance on Saturday, and it really sucks how sick I feel.  A pad in my underwear to catch the drip, and some good marijuana will probably get me through, 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.

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.

I need more worms, I assume, though my egg count hadn’t dropped by much last time I checked.  But these same symptoms happened after about 6 months from a dose last year.  This time, it’s been 8 months, last year I infected at month 7 before things got this bad.  Maybe next time I’ll be proactive and infect at month 5 or 6…I always have some bad reason for waiting.

And now, because of the FDA ruling on hookworms as a drug, I can’t talk about incubation.  I don’t have a level 2 lab, which means I’m not allowed to work with infectious organisms.  So I can’t discuss how tap water probably killed most of the first sample.  The excitement of seeing live organisms.  The frustration of trying to pick them up and losing them again.  All the dessicated and sad looking larvae.  The 3 I managed to pick up, and what I did with them. Decontamination techniques. What the hell those round, swimmy things are and should I be worried?  How nice it would be to share data with other worm farmers and not risk hefty fines or jail time!  As it is, the last paragraph was all a dream…

We scuttle together in the privacy of cell phone conversations.  We compare reactions, and try to make sense of it all.  We meet in private and learn from one another, scared that we will get caught.  Persecuted for daring to try to make ourselves well.  The Lowly worm, such long reaching consequences.  At least TSO will be in multi-center trials soon, and some few hundred people can try worms for free.  That data will be logged, published, and hopefully one day we will get pig whipworms under a prescription, know what dose to take, how often, and for how long.  Meanwhile, the hookworm trials crawl along, and the rest of us are left struggling with how to put the worm in our hands, and keep ourselves well.

I hastily try to reinfect before I have nothing to infect myself with.  But sshhh…

I’ve been asked to play bass guitar in a band who’s playing 5 Clash songs in two weeks.  I said yes, though I’m kind of rusty, and I feel like absolute shit.  Hoping that I can reinfect before then, so I won’t feel like throwing up or having urgent diarrhea during the set.  It feels pretty awesome playing “London Calling” until you have to rush to the bathroom with mucus in your underwear.  I’m tempted to tell the band,

“Hopefully I’ll get some hookworms in me before June 5th otherwise I’m not sure I can make it.”

As a female bassist, it would sound pretty bad-ass.   A hookworm rash would just add to the mystique.  It sucks having Crohn’s disease, you never feel like you can promise anything in the future because you have no idea how you’ll feel.  But I’m bold.  I said yes because I’ll be damned if this disease or this therapy gets in the way of my life.  I’ve had enough of that already.

There will be a few hundred people, and I HAVE TO feel better before then, and hookworms are all I’ve got.

I just wish I could talk about it all.  My blogging days are numbered.  We will have to wait for a cure in secret.  I’ve gotten in too much trouble already.  The last thing I need in my life is another rude email or a knock on my door.

“FDA.!  I hear you have an illegal lab.”

“I’m not selling anything.”

“You have the right to remain sick.  You have the right to an attorney to help explain to the judge and jury that you need to illegally breed an infectious nematode to keep your Crohn’s in remission.  Your doctor doesn’t sanction this.  Your provider’s already been run out of the country.  Prison food will make your Crohn’s worse.”

I’m getting too dramatic.  Got to go stir my potion.  And practice “Straight to Hell”, which some would imply is where I’m already headed.

* your experience with TSO, hookworms, whipworms, and other alternative remedies

* incubation techniques, egg counting  (I can teach you how to do a McMaster egg count, show how to recognize hookworm eggs, the equipment needed, etc.)

* the legalities of this therapy.  With the recent FDA classification for hookworms as a drug, what legal rights to we have as patients?  Are we allowed to share? Are we allowed to host worms even if they are illegal to obtain?  What about children?  Do we have the right to prevent disease, or only use worms to treat disease after it’s occurred?

*alternative ways of getting the worms safely other than the commercial companies

* how to bring more positive attention to this therapy

* how to encourage our doctors to research, further the research, use us as case studies, etc.

* how to affect the FDA ruling and help the paradigm shift along

* creating an open-source, public database on our side effects, blood tests, reactions, proof of efficacy or lack thereof, etc. to keep track of our data and have a place that interested parties can see what other people are going through, their lab data, how long progress lasts, egg counts, etc.

* and just to meet with other people trying this or who would like to try it, to help normalize the whole concept of hosting worms

Please contact me by clicking on the contact link, where you can email me a personal message stating your interest.  Let me know when you are available, whether weekend or weekday is best, evening, etc.

We are all in this together, and giving each other support for our various trials and ailments would be wonderful! I think it’s also time for a robust DIY community to form. I realize most of you will not be able to come to California, just hoping there are enough people in the Bay Area interested in something like this.  Perhaps we could put up notes or do a virtual stream during the meeting, if other people would be interested in joining,  but unable to in person.

Thanks!

But my experience has been so roller coaster-ish, that I don’t know if it’s a good demonstration of the realities of the therapy.  Although each person is so different, I’m not sure there is a “normal”, perhaps this blog, since there are so few, is a detriment rather than a help to people wanting to seek out information.

I’ve had a lot of positive feedback from people wishing to try this, since they are glad to find an honest report of one woman’s progress.  I’ve been contacted by CBS, professors, a NY Times reporter, and helminth immunologists, all thanking me for my story, and I was glad to do anything I could to help promote the therapy. I’ve given enough interviews that I think I’ve done my share.  I also would much rather be known for my business (we’ve started an urban farm and underground restaurant, and are selling flowers and unusual produce to high end restaurants, and will be starting classes on gardening, canning, bee-keeping, chicken raising, etc.)   But if this blog is harming people more than helping, this hasn’t been my intention.

It’s hard, because there as so few people trying this still, and there is a desire to have a community, to learn from one another.  The incubation process is a big one – because the founders of the worm companies face such retribution from their actions, they are unable to give guidance as to how to safely incubate and reinfect, and it has been invaluable to me the support I’ve gotten both on and offline from various people.  That has been the main purpose lately for my keeping up the blog; the sense of community and a feeling of we’re-all-in-this together type of thing.

But if it is keeping people from trying to get well, then it is doing more damage than good.  This blog has been a side project that has been appealing in that the hygiene hypothesis is being proven, and we are proving it!  It’s been very exciting to be on the cusp of a whole paradigm shift.

But I’d rather people get well than be frightened by my experience, so I’m contemplating taking it down.

I’m wondering what other people’s opinions are?

Perhaps some of us need infection more frequently, that it is the infection itself that is part of the immune balancing, as well as the worms?  I also might not be at a therapeutic number for long-lasting results; I added only 10 worms last time on top of the first 10, so only 20 worms.  Some people need a lot more to get to or maintain remission.

So I’m going to try to add another 10 hopefully soon, and see what happens.  I hope it doesn’t contribute to too much diarrhea, since I’m barely progressing with the mineral repletion.  But the inflammation in my ilium isn’t going to help absorption, so it might be that in order to maintain wellness, I might regress a bit in the mineral loss.

So hard, this experimentation.  I meant to add every 6 months regardless; as things started to get worse, I should have been proactive and not let things get bad again.  But there has been so many things I’m dealing with; a new business, the anxiety/depression, mineral deficincies, etc., that I haven’t been proactive enough.  Hopefully the worms in my incubator will hatch, and I will be closer to wellness in a week or so.  I wish we knew the “right” way to infect, and what was needed for long lasting wellness.