I will be trying to incubate again this week.  I will share my methods of success or not.  Meanwhile, here is another place where someone is experimenting with incubating hookworms.  Let’s help one another, shall we?

The Crohn’s? No pain, no night sweats. No diarrhea throughout the night. I can eat a huge variety of foods I couldn’t before. For this I should be grateful.

And I am, I am. But I’m at the tail end of a few weeks of badly chosen foods. Chinese food followed by cabbage followed by raw vegetables followed by homemade pickled beans. The culmination which means more frequent bowel movements, a diarrhea thrown in, more mucus, more gas. I ran out of VSL#3 a few weeks ago and was substituting some old probiotics, and have started iron pills. I was praying for constipation from them, but no such luck. And I’ve got a bad cough, so I’m just feeling a little sorry for myself. I’m still going to the bathroom at least 3 times a day. SOOOO much better than before, but I just want to have a solid bowel movement every single day, eat some raw vegetables and not have to worry. Is that too much to ask?

The mental agonies of a lifetime of Crohn’s are just not easily swayed. The SSRI has helped – until my hormones tried to envoke the first period after the miscarriage. Two weeks of PMS…the return of anxiety, insomnia that I shut off in a day by swallowing Ambien every night. I hate being on medications at all, the irony of which I am off all Crohn’s drugs, but now need Celexa and Ambien. It’s like the volcano of fears that lay hiding behind the surface of survival have bubbled up. Pay attention to me! You ignored me! I want their ugly bile to spray out into the atmosphere never to return.

How do you erase 22 years of illness? I’m delving into the psychology of my upbringing, working every day to appreciate the little things. But I was talented, advanced. Preened in private school, taught I could do wonders. Learned languages, wanted to travel, I could paint, draw, compose, write. Leaped tall buildings in a single bound.

I’m also good at calculus.

And what have I done with it? I’ve lived in Italy, learned to speak French. Worked as a nanny in Ireland, am respected by my doctors for my acquired knowledge. I’ve met and married a saint for a husband, kept the relationship for over 15 years, had 2 children naturally, nursed them for 2.5 years. Kept them from autism, autoimmunity (so far.) I homeschool, bought a property in the second most expensive place to live in the United States, co-own the house and lot next door, created an enormous garden that people express envy and awe at every time they see it. Have created an artistic community here. Sold paintings, made people cry with my music. Tried hookworms. Learned more than I ever wanted to about them. This blog. All with terrible Crohn’s. A triumph!

Why do I still feel like such a failure?

Every moment is punctuated by the fear of returning to that desperate place. Being housebound, emaciated, with nothing left to try. It was a reality just a few years ago. Even the hookworm journey was frought with stress, as I had strange reactions, experimented with weird dosages, lost the worms, had to try again. Then the FDA steps in, shuts down struggling worm vendors, the Nottingham studies are not very successful, the science rambles on. I like to help everyone with my McMaster egg counts, but why the hell am I doing it at all? Where are the helmith immunologists holding my hand and telling me what to do?

How many gratitude journals will it take to recognize my triumphs? My friends battle cancer, divorce, losing their careers, their houses. I am lucky compared to them. I never had a career to lose. I have a chance again for wellness. The worms have helped and for many that is more than they’ll ever get.

I suppose if I were raised in poverty I would already feel wildly successful. It didn’t help to live near OJ Simpson. For neighbors to sit in their Jaguars and scratch their plastic surgery perfect noses. We were not rich, but surrounded by the ostentation. I had talent and drive to make up for the lack of millions, but Crohn’s finally eroded so many dreams that I became afraid to try again.

I’m supposed to be going back to LA in a few weeks and I am terrified. Will I sleep? Will my father ask why I haven’t finished by book yet, why I’ve only made $800 for a painting and haven’t shown in a gallery for years? Any drug addict can get pregnant, so my children are nothing but successful genes passed on, in his eyes. I try not to listen, but it still really hurts. He’s been healthy his entire life. Is 83 and never been on a single medication. How can he understand? Will I run into my classmates who are now billionaires instead of millionaires, who also have successful marriages and children and not feel like somehow the top of the class has failed in not standing beside them in all their fame and glory?

Does Stephan Hawking feel sorry for himself?   Would he feel sorrier if  he’d never written a thing?

I’m trying to relish my daughters’ smile. I do, everyday. I hug my husband. I walk to the beach and meditate. My daughters are selfless, they are glorious. I get praises constantly on their character, their beauty, what a great job I’ve done.

Every day, I pray for peace and healing. I pray that more people with IBD will know about the worm option, so that they can prevent their intestines from being cut out, from the ravages of this terrible disease.

Mostly I pray that they can be prevented from the mental despair of giving up time and time again. For the heroism involved in choosing what to eat and wondering if it will hurt coming out, for braving through college and childbirth and just life without chronic illness, chronic fear.

I hope that my children and our future don’t have to walk this path. I sometimes hope that I can breathe out a wisp of curative so that humanity can return to wholeness. Is there a reason for my suffering or was it merely the lack of microbes? My life is beautiful, it’s not that bad. I should be happy. I am.

But will I ever be whole again?

I got 10 new hookworms in February 2009, then 10 more in late September 2009. My last egg count was 1400 epg. My CRP (measure of inflammation) has been normal since March 2009.  So 20 worms are working for me.  Weight’s been normal since March, I can eat most foods but still get diarrhea from too much fiber.  Now my hormones are causing anxiety/depression, but I’m assuming that’s un-worm related.   I’m almost 38 years old.

I wish we knew the ideal dosing number and dosing schedule.  It seems that those with the best response are getting at least 20-30 hookworms, though I also know of Crohns patients who had to terminate because 20-25 worms were way too much at once.  I wish these studies were faster since we’re just dosing in the dark.

The asthma study:

http://www.ncbi.nlm.nih.gov/pubmed/20030661

Experimental hookworm infection: a randomized placebo-controlled trial in asthma.

Feary JR, Venn AJ, Mortimer K, Brown AP, Hooi D, Falcone FH, Pritchard DI, Britton JR.

Division of Epidemiology and Public Health, University of Nottingham, Nottingham, UK.

One is a blog:  http://lukecology.blogspot.com/

Luke’s having a mixed response to 30 hookworm larvae; perhaps coming off the Prednisone is contributing to the ups and downs?

And a wonderful account on the yahoo forum of a female who tried 35 hookworms and is doing better than she has in years:

http://health.groups.yahoo.com/group/helminthictherapy/message/3795

If you’re someone with Crohn’s trying hookworms or whipworms, could you let us all know how you are doing?

Anxiety has crept back the last 2 days, but I think it’s hormonal, since I should be getting my period any day now.  I’m also incredibly weepy.  Muscle fascilations and heart palpations have increased, so will try to up my magnesium supplements, and it’s time for a good calcium supplement, and just generally better nutrition.  I hope it’s just deficincies and when corrected, I’m in a good place.

I don’t know how long it will take for my psyche to realize that I have found something that works and should continue to work.  But years of fear have taken their toll, and it’s a challenge to reprogram a 21 year fear.  And I’m really not taking my supplements regularly, so it probably will take some time to correct years of defincies, alas.

But at least the worms are alive, and working!

I tried 10 hookworms Dec. 17, 2007 for the first time.  I’ve had Crohn’s colitis for over 21 years, my symptoms before hookworms were:  weight 137   Night sweats nightly.  Went diarrhea at least 4 X in the night, another 4-6 times during the day.  Very painful, mostly all diarrhea or some soft, loose stools.  I had urgency so bad I wore adut diapers at night, otherwise I’d spew out onto the floor on the way to the bathroom.  My ileal-cecal valve was inflamed to the point of causing partial blockages almost nightly, very, very painful.

My ESR was 35 (normal <20) my CRP ranged from 5 -11 (normal < 0.5)  (These are blood markers of inflammation.)  I had constant acne, my hair was all broken off and greying, and I looked sick.  I was anemic, didn’t have much energy, and could only eat a few foods: SCD homemade yogurt, blended chicken soup, jello, bananas, onions (cooked), and everything else was suspect.  I was depressed, hopeless, and just plain sick.  I had tried all Crohn’s drugs, having just failing Humira, and all I had left was Tysabri, which wasn’t yet available.

The 10 hookworms caused: fever days 3-10 (or it was the flu), increased diarrhea during that time.  Edema in my ankles weeks 3-10, reactive arthritis in all joints during this time, and just a general up and down that I never knew to attribute to the Crohn’s, viruses, or the hookworms.  By week 3 the ileal pain receded.  By week 5 or so I started testing new foods and gaining weight.  By week 20, I was 150 pounds, and my CRP and ESR were normal, had very little bowel pain, and I was beginning to sleep through the night, and have 3-5 BM’s a day, ranging from soft to the occasional solid, to diarrhea, but the diarrhea was more related to foods than a general symptom.

But alas, I redosed by 2-3 worms every week between weeks 10-18 and this provoked an immune response that muddled the whole picture.  The last dose caused bad diarrhea that lasted for weeks, the joint pain came back, but muted, and as the months went on, I slowly got worse.  I started to develop weird neurological symptoms in the summer after a series of iron shots (still not known if they were related):  my hands went numb, tingling in my head, pin-pricks in my feet, dizziness.  This went away by October, after some dental work.  I found out in December that I had no worms.  I don’t know when they died, but in July, I still had some, so somewhere between July and December.  My symptoms just kept worsening, and by December, I wasn’t as bad as before I started, but I was getting there.

By February of 2009, my CRP and ESR were creeping back, and the night pain was back, along with night sweats, malaise, and I had lost more than half of my weight gain, and was back on SCD foods.  I redosed with 10 hookworm on February 2nd and felt a lift immediately.  I was “high” for about 5 days, then had a little up and down for the first few weeks, but by month 1, was so much better I was elated.  Night sweats gone, pain reduced almost to normal, and my ESR and CRP was normal again.

I continued to do well, up and down, but generally up.  I had more iron shots and experienced the neurological weirdness anew.  CRP and ESR were normal every month I checked.  My weight steadily climbed to 150 and stayed there.  I was able to eat a huge variety of new foods, but still reacted with diarrhea to certain things (Indian food, Chinese, high fiber, etc.).  I started to develop anxiety on a trip when I got insomnia, but it resolved when I got home.  But the next few months, when PMS’ing, I would get it again.

By the end of summer, I noticed my bowel symptoms slipping, and I was getting nauseous.  I did an egg count, and from the 6 month peak of 1050 epg, I had fallen to about 800 epg, which was expected (since they’re supposed to peak around 6 months.)  I tried Lexapro and the anxiety got worse.  I did another egg count and it had dropped a little more, so I redosed with 10 more hookworms the end of September.

This time, I got high for a week again, and got pregnant.  (Beware!) The next few weeks, I had diarrhea and the nueropathic symptoms returned (having faded to near nothing, and all tests, MRI and EKG’s normal, so it remains a mystery).  The pregnancy symptoms began, so it was hard to know what was nausea from the worms or the pregnancy.  Finally, around week 6 of the worms the diarrhea abated, but I found out the pregnancy didn’t take, so was still nauseous but waiting for the miscarriage.  Bowels started doing regular solid, just some soft ones thrown in.  Weight crept up to 156, and eating became productive.  Food choices expanded, and I started tolerating a little milk in my tea, bread, chocolate, most foods, still getting diarrhea from Chinese food and Indian food, but not much else.

Had a miscarriage just after Thanksgiving, and the neurological symptoms mysteriously improved.  Also started Celexa  and Ambien during the pregnancy, very slowly, and that solved the anxiety/insomnia issues.  Lost a lot of blood a few weeks after the miscarriage since one piece was left behind.  But it came out, and the miscarriage was over, no D&C with dreaded antibiotic shot required. (yeah!)

So, now?  156 pounds.  Need to do a blood and stool egg count, hopefully everything is fine. I’m probably anemic by my symptoms again.  The neurological stuff is vastly improved, and may be related to mineral deficiency.  (Am tolerating 400 mg. of magnesium glycinate; may up dose more if I can.)  I am eating most everything, especially too many sweets around the holidays.  My hair has all grown back in and is shiny and un-broken off.  I seem to have less grey hair.  I have lots of energy (well, since the miscarriage, this has fallen, but I need to build blood back.)  If I eat really well (mostly vegetables, meats, take my probiotics, etc.) I have mostly solid stools.  I have no intestinal pain.  I did have my ankles swell a few weeks ago after walking a long time, and one really hurt, but it’s normal now, so ?

So all in all, hookworms have been a huge improvement for me.  People tell me I look better than I ever have (my sister), and people who see me seldomly are saying the same thing.  I am actually looking ever-so-slightly plump, which is a first.  (Though I’d have to gain probably 20 more pounds to be truly plump.)  But my jeans are all too tight, but part of that was the pregnancy belly which is still there after all the cookies of Christmas.

It hasn’t been an easy or straightforward ride.  But losing them and losing efficay was pretty telling, then reinfecting and gaining efficacy again.  Obviously they work as long as enough of them are in me, alive.  And side effects are nothing to sneeze at, but tolerable.  The first time was by far the worst time.

I’m going to do another blood test this week, another egg count.  An incubation.  (First one was abandoned due to the miscarriage, so we’ll try again.) I don’t know when I’ll infect again, and whether or not I’ll try whipworms.  Right now, I am satisfied and am in the “good enough” faze.

I’m taking:  20 mg. of Celexa,  4 VSL# 3 capsules a day (2 morning/ 2 evening), magnesium 400 mg., and a multivitamin, kelp, and vitamin D. (7000 IU a day)  I keep forgetting to take my fish oil and evening primrose oil, but that’s supposed to be in there as well.  And Floradix for iron.

I am pleased so far.  Just wish I had been dosed once last year and had patience.  Each redose causes havoc, I have never dosed more than 10 at a time, but hookworms work.

Thank God I never needed Tysabri.

But the bad news, is all of those iron shots in the Spring have been depleted. I haven’t tested how much blood I lost, but I am pale and dizzy, my heart is racing, and I can’t do much around the house. I’ve got that lovely wan look so favored in Victorian times. Now my red lipstick looks more dramatic!

So I ate liver for dinner (so gross), with molasses bars for desert. I am drinking Floradix twice a day at a double dose, and depending on what my blood test brings back, perhaps I will contemplate iron pills.

The good news, Crohn’s wise, is that I am having mostly solid stools! I think I was reacting to the new hookworms for some time; now that I’m entering week 13 of the new batch, the side effects are over, and I’m tolerating many new foods, such as milk in my tea (it’s raw milk cream, if that makes any difference), kale for once in my life (this is a miracle. Considering I have always grown tons in my garden, and it’s one of the most nutritious green, never could tolerate it without gas and diarrhea, so this is a milestone, albeit not the most exciting one.) Stout beer and BBQ potato chips give me gas. I’m still having mucus, but now just before a large bowel movement. I have no bowel pain, and am going about 2 -3 X a day, mostly in the morning. If I eat a lot in the day, or don’t go for a day (which is the other miracle), then sometimes I have to go at 4 AM, but then I go back to sleep.

The Celexa is working wonders – the anxiety is gone, the insomnia is gone. I am sleeping without Ambien, no more racing heart, and I am much, much happier. I plan to stay on it for a year, hopefully have all of my vitamins and minerals at normal levels, have a good strategy of meditation, exercise, yoga, and positive thinking in place, then slowly come off it. By then I should have a handle on how often I need to infect with hookworms, how to incubate them and infect myself, how long the side effects last, etc. That was a huge level of anxiety, and then with AIT up and moving out of the US, it hasn’t been very comforting.

So now (hopefully) the one month miscarriage is complete, and I can eat, drink, and be merry for Christmas, safe with my beautiful family, grateful for sleep and tea and toast, and for the worms and the worm provider for the chance of a drug-free remission that hopefully will last and last.

Merry Christmas, Happy Chanukah, and Solstice, everyone. For those of you suffering with Crohn’s, may you find quick relief.

I am an artist, among other things, and I figured most people wouldn't appreciate a picture of the bloody placenta, so this drawing somehow captures the feeling post-miscarriage...

I always get from people, after explaining that I am using hookworms to control my Crohn’s disease, that I am very, very brave. I usually reply that it was scarier going to the oncology department of my local hospital and being hooked up to my first infusion of Remicade. Especially after almost dying from neutropenia caused by 6MP, after having tolerated it previously. There’s nothing like experts at UCSF shaking their heads, consulting with Cedars in LA and saying I was their first patient to react that way after doing fine with 6MP for years, and having been on it for months without issue. That was years ago, I’m sure there have been many cases since.

Kind of scews the whole percentage thing. I realized after that lovely episode that you either react to something or you don’t. It makes trying new things a little frightening.

And of course, I had a very unusual reaction to my first dose of 10 hookworms. First fever, increased diarrhea (though we’ll never know if it was a stomach flu I picked up on route to Tijuana, and all the disgusting bathrooms I had to stop at along the way.) Then, at week 3, I got edema in my ankles and such bad reactive arthritis that I could barely walk. I also had no medical support, as my doctor had never heard of using hookworms for IBD, and his parting words were, “Who knows what you’ll pick up in Mexico?” So I suffered in silence, getting through Christmas, the New Year, and being the first person to react so horribly to so few hookworms. I’m sure there’ll be many after me, again.

So what does this have to do with miscarriage? I finally had mine on Sunday night, and let me tell you, it is rough being a woman sometimes. It makes the edema and arthritis look easy in comparison. I’d been having a little blood and cramping the few days preceding it, so I knew a miscarriage was immenent, and an ultrasound a few weeks ago showed I never had a baby – I was the proud parent of a yolk sack and a fetal pole that had already started to dissolve.

So I started to bleed and put a pad in. We were ready – Recharge, even Gatorade on hand, lots of menstrual pads, and the phone number for the Ob/Gyn on call just in case. Neighbor’s car to borrow if needed. Mom staying in the RV.

First the contractions began, and they were contractions. I’ve had two children – natural childbirth, so I know contractions when I feel them, and these were 3 minutes apart, and about the severity of labor halfway to birth. I did the low aaaahhhs that helped me get through my second child, but finally gave in and took 3 Tylenol after my husband asked me, “why suffer?”

And then the bleeding began. And it was gushes of blood, no measly period like trickle. I had a towel under my butt in the bed, and a heating pad across my abdomen. It soon became apparent that I had crossed the “soak a pad in one hour go to the hospital” rule, and I started to shake and get nervous, since my last miscarriage ended up in the hospital, with a D&C that required an antibiotic in the IV that flared my Crohn’s, beginning the 3 year spiral into hell which resulted in me trying hookworms. I didn’t want to repeat that experience, and had already talked to the OB/GYN and said IF I needed a D&C I was going to take my chances and sign a waver, get no antibiotic, and if I ended up with a uterine infection, I’d deal with that later. I had almost fainted in the office when she discussed what could go wrong, so I wasn’t very brave about that option.

The bleeding got so bad I told my husband that we probably should just go to the hospital. But at that point, I felt a blob against my vagina, and got up to go to the bathroom.

“Holy shit!” my poor husband cried as blood spilled out onto the floor, across the hallway, marking a path as grissly as the CSI movies you see of someone stabbed to death. We joked later that the crime techs would pick up lots of splatter marks. I read too many murder mysteries.

The bathroom floor is painted an unfortunate white, and I continued to mark my path to the toilet. Like a horror show, I reached and pulled fetal tissue from my vagina, blood pouring down my hand, all down my legs, pooled into my soft “miscarriage socks” I had bought especially for the occasion. My husband brought a plastic container for the pieces of placenta, so we could bring them to the hospital if needed, or bury them under a newly planted bush if not. We like to put placentas under trees and have little ceremonies of life. We’re hippies that way, I guess.

My husband had called the doctor on call when the gushing had begun, and she talked to both of us, letting us know that if I wasn’t dizzy or passing out, and as long as the blood wasn’t continuous, that it was normal to have a lot of blood when the pieces were coming out, so I cleaned up as best I could, got the leftover Depends adult diapers I had from my bad Crohn’s episodes, and returned to the bed.

The process repeated itself several times, although this time I held the diaper under my vagina so I wouldn’t stain the freshly cleaned hallway. The trashcan quickly filled up with blood soaked diapers, as we had stopped with the underwear after several were stained and tossed in the sink for later washing. I made my husband come with me every bathroom trip, in case I fainted during the whole process. We had kept a heater going, so it was nice and warm. The plastic cup slowly filled up with disgusting pieces. At one point I took a shower and had to rinse off my legs and vagina, but as I was dripping a continuous bloody mess, it was hard to clean it up, and then the shower looked like a crime scene.

I finally stopped around 2 Am – about 4 hours of on and off goriness. I licked salt the whole time, drank lots of recharge, tried to drink Gatorade but I haven’t had corn syrup in over a decade, and it was disgusting. At one point I stopped for a bowl of yogurt and bananas to replenish. I have a homeopathic anti-anxiety pill that I kept putting under my tongue so I wouldn’t freak out that I was bleeding to death. It helped.

It took a while to go to sleep, my husband snoring at my side. The blood had died down somewhat, and I tried not to move. My diaper was uncomfortable, but I got used to that the months preceding hookworm infection.

The cramping has continued, like afterbirth pains. I’ve had to take tylenol every day and use my heating pad, since it hurts. My gut is a little unhappy being next to all of this action, but I’ve had some solid stools mixed in, just going more often, and I’m trying not to worry about it. I’m barely bleeding now, but feel like I’ve been through quite an ordeal. Tomorrow I do an ultrasound to make sure all of the tissue is out, and it better be out, is all I can say.

I think I traumatized my husband. Men don’t have to deal with blood every month. We’ve gone through so much together, between the horrible Crohn’s, the near fatal drug reactions, the hookworms. Two births. The real births were way less messy than a miscarriage, and we had a midwife who brought a level of competence to the whole situation. All he had to do was support me.

But I’m glad we didn’t go to the hospital. I’m relieved we made it through. I’m happy it happened after my girls went to bed, since I don’t really want to introduce the horrors of being a woman to them quite yet.

My daughter woke up and used the bathroom before I could warn her that there was plastic container full of bloody pieces on the counter. She said, “Oh, it’s no big deal, Mom. It’s much better than poo sitting on the counter. It doesn’t smell as bad.”

I’m raising such brave girls. This was just another Mommy ordeal, one in a series of strangeness that they accept as part of my life. I’ve done enough egg counts that they’re used to Mom playing with her stool. I show them the hookworm eggs under the microscope, enough times that they’re bored with the experience.

My God, though I’m glad that is over. I hope I never go through another miscarriage again. Getting infected with some measly hookworms seems like nothing.

The short list of suffering? My joints hurt. This time in my hands, hips, and ankles. My muscles are sore. And not from activity. My nerves hurt. At times they burn, other times just sore to the touch. I am slightly dizzy at times. My lips are tingling, hands and lower arms sometimes go numb. I’ve had terrible anxiety and depression, which caused insomnia, somewhat managed by Celexa and Ambien. Not sure whether to blame that on the worms or just the fear of the symptoms they cause, or just the hell of the last few years. Sometimes my head tingles. My muscles are twitching. All over, jumping around.

In February the nerve stuff got so bad that I went to a neurologist at UCSF who ran a brain MRI and nerve conductivity test. The good news, is they came back normal. I had had a bunch of iron shots then to correct longstanding iron deficiency, and I blamed the “neuropathy” on that, but this time, nothing has changed but new hookworms. The same thing happened last year, but I had a few iron shots then, so couldn’t be certain what was what.

I had a kind of similar thing happen a few months after being on LDN, but it was more acute and included a rash all across my bottom, so we concluded I had grown allergic to sulfasalazine which I was also on. I stopped the sulfa, but then flared and had to stop the LDN, so I never learned the cause. Later, I went back on LDN for a few months and it didn’t happen.

So I have to conclude these are all worm side effects. In the Spring, it slowly got better, but by summer I was still twitching and that’s when the anxiety began. But as the symptoms got better, the Crohn’s got worse. Last year, the symptoms completely resolved when I lost my worms.

So Crohn’s disease or nerve/muscle/arthritis weirdness? I truly am hoping it’s a temporary reaction and then the immune system settles into a comfortable happy medium. Throughout this year, my blood tests have been mostly normal; no markers of inflammation, so whatever is going on, if it is inflammatory, isn’t registering on the CRP and ESR scale.

Interesting that the House episode included tetany as one of his presenting symptoms, but I got scared watching that, and didn’t see past the first 10 minutes, and my husband forbids me to see the rest insisting I can’t get clues from a House episode, but wonder where the tetany as a symptom of liver worms came from?

One other patient with a host of autoimmune diseases is 3 months into his worm infection, and has similar side effects – he had just calf twitching and is now twitching all over, has bad joint pain, and some dizziness. I don’t know about the nerve issues.

This is one of the bad things about not going through a study. We have no idea of the numbers of responses, how often this occurs, or why.

I’ve had Crohn’s disease for 21+ years and have never had arthritis, nerve pain, muscle pain, or dizziness in my life. So I can’t attribute it to that. The only extra-intestinal manifestation I’ve had was a skin condition that happened once, after putting some chemical with skull and crossbones on my fingers, and I still have scars from it. erythema nodosum. I was a nanny in Ireland at the time and it took months to abate. That was lovely.

So it’s not all – take worms get better. Suffer temporarily. The suffering seems to come with each infection, and lasts for months. I’d kill the worms and see if it all goes away (as my Crohn’s worsens) but without a source, I don’t dare. And I’m 10 weeks in, with the hope it will abate in the next 2 months. I don’t want to start over.

Definately not a bed of roses.

And I’ve still got a lovely miscarriage in front of me, the bleeding of which has just gently started.

When do the good times begin? I ate Thanksgiving food at least, with real bread stuffing for once in a decade. But I still had gas.

I wonder for myself, what posting an Incubation 101 would mean to me.  It is just the sharing of information, and from what I understand, I believe my first amendment rights gurantee I can say what I want.  I am not selling or distrubuting the organism, but are we legally allowed to be working with an infectious organism that is considered a menace to society?  (Or used to be, but the research is still a hypothesis at this point.)  Many of those in the Nottingham and recent celiac trial elected to continue hosting their hookworms, but they may be protected under the protocol of being in a scientific study.  We are not.

Does anyone know what we are legally allowed to do here?  This is such a grey area, I doubt there is a helminthic therapy lawyer out there who could advise us. The problem is, we need someone besides ourselves to be hosting the worms in case we lose them accidentally.  So that would involve infecting someone, and among consenting adults, is that acceptable?  We can do fecal transfusion enemas, so in essence, we’d be sharing potentially infectious organisms there, but a worm is a whole new thing, especially considering we could contaminate the garbage collector if we do something wrong, and needless to say, we have to be weary of where we leave our feces.  Are chemical toilets adequate?  We couldn’t camp and go to the bathroom in a hole in a warm, moist environment.  Can anyone think of ways that we can protect ourselves and continue to experiment with this therapy?  Should I be paranoid and take this site down?