I caught a terrible cough though, and while I was enjoying this wonderful break from pain, I was coughing so much that I pulled a muscle in my ribs.  But the pyodermic bump became less red, grew smaller, and I began to feel like perhaps there was hope in this world after all.

So of course, I had to push my boundaries and eat wildly off my diet well into Thanksgiving, and the second infusion did not act like a miracle to reverse the looser stools  and ileal pain that was beginning to form.

So on December 1st I went back on strict SCD and added some anti inflammatory substances:

LDN 4.5 mg

curcumin 3 g

green tea extract 1 g

l. glutamine 9 g

fih oil 3 g EPA/DHA

and within a few days, solid stools returned and have been ever present.  Pain is better, but not gone.  Pyoderma is still pain free, all white with scar tissue, bump way smaller, but not gone.  So yet again, lesson learned that I must always be diligent with diet and not expect any one thing to be the miracle that allows me to be the glutton and drinker like I truly desire…sigh.

I went to a UCSF immunology and took a bunch of tests, but they found no immunodeficiencies.  Then why don’t I get eosoniphelia when I’m first infected with hookworms?  At least she’s willing to instruct my doctor in the dosing used for other autoimmune diseases.  The current plan is to do 4 monthly infusions, then wait.  When I regress (if…I should try to stay positive) then we do 4 more.  Assuming my insurance keeps approving it.

I’m also taking advantage of my relatively stable health and getting my mercury amalgams removed.  Interesting that a Cliffords test looking for what dental materials I accept showed an intolerance to all metals but titanium.  Confirms why I can’t wear earings for long without getting pain or itchiness.  I wonder what one of the most toxic metals in my mouth is doing to my immune system?  We’ll see if it makes a difference.  1 down, 5 more to go…

I’ve got a holistic dentist who is doing everything properly, but I’m doing weekly IV vitamin C and glutathione, plus a 1 hour biomat session to help detox.  The latest session left me really tired and then I had the strange sensation a few hours later of having to poo, and a bunch of brown, slightly greenish substance came out…I guess mucus..and I have no idea why except maybe it’s detox…it was only that one day.

I trust nothing will be effective for long, so I hedge my bets.  Next week I go back to Mexico to get 10 more hookworms.  The never ending experiment…

I set the surgery date and was marked for both a colostomy and ileostomy. I had a colonoscopy scheduled the day before, and went in with it with a six month expectation to get through the surgery, take Tysabri or Stelara for enough time to get more worms in me, raise my vitamin and mineral levels, build my probiotic levels back up, maybe even a few fecal infusions. But the colonoscopy showed such a scarred and battered rectum that it wasn’t hook up-able, so what I thought was temporary is now permanent and I am still reeling from this emotionally, since I had no idea it was so bad.

I killed the worms before surgery. Just in case they had any contribution to the infections. I cried doing it. If you’ve read through this whole blog you would know how invested I am in this therapy so the disappointment of this failure is tantamount.

I’ve since heard from two Crohn’s disease cases who were in remission but since have had more disease activity so much that one had to go back on Humira, the other Remicade. I remember a few years ago, one of the researchers who was involved in the first proof of concept CD study said that most patients had to use medications along with the worms, but the worms helped those meds work better. There aren’t that many of us doing this over 3 years, so it may be that after a year or two, the immune system overrides the worms’ effects. It could be more worms are required more often, or a combination of worms, etc. Had I been able to infect every 6 months with 10 hookworms, maybe that would have kept me in remission. Had I not tried the TSO maybe the dose of hookworms before that would have had a chance to work. Or maybe not. I can’t go back.

Sometimes I regretted not doing the human whipworms. But I heard from one UC case who had the worst ulceration in the area where the whipworms resided…and had his first solid bowel movement after finally killing them off. Another patient after getting solid, documented remission later had bad ulceration where the whipworms were and worse small bowel inflammation. So why does it work for some, for just a while, for others not at all? I was hoping by now we’d learn more.

Jasper gave me my refund back, by the way. True to his word, eventually.

I’m sitting at the UCSF infusion center, waiting for my first Tysabri infusion. The reason I did the worms was to avoid this. Yet here I am. I can’t even begin to describe the disappointment and mental pain.

The surgery didn’t go smoothly. The rectal stump blew, causing infectious fluid to leak into the abdominal cavity. I had a high fever and had to get a drain put in, which was hard to deal with. Getting used to the ostomy has been challenging. Then my intestines froze for 3 weeks and I was unable to eat without severe bloating or vomiting. I had to go on TPN, my magnesium kept dropping, the suffering seemed never-ending. I finally went home with a picc line, learning self-administration of this labor intensive fluid line that pumped all night.

Then as things slowly got better, I started getting sores under the stoma, and each bag would leak, since the drain was still in, right next to the bag, making a crease, but the wounds were also where the stitches were dissolving, so the possibility of it being a Crohn’s thing became suspect. It gets better then worse and is still painful. Now I’m waiting to see if the Tysabri helps.

The whole last year has been a nightmare that never ends. But at least the rectum is quiet now, no abscesses or fistulae. I guess the plan is to try Tysabri… If it works, then just try to enjoy some good health for awhile. Even when the worms were working, I had magnesium loss and the side effects that created, a miscarriage, the stress of fighting with Jasper, the notoriety from this blog. Watching some people get worse on worms, others miraculously better. Not knowing if it would last.

I’m almost 40 and I guess I’m still alive. But I wish life weren’t so hard. I’d sure love a long-lasting remission. I’ve suffered quite enough.

Back in the hospital again.  Two new small rectal abscesses.  What the hell is going on?  I never had abscesses, fistulae.  Are the hookworms doing anything negative since they are unable to do their positives whilst on antibiotics?  My GI says if the infection doesn’t clear in 2 weeks, then the only option is a colectomy or temporary one.  Um…what?  The rest of my colon is inflammation free for the first time, my ileal-cecal valve hasn’t had activity for years, it’s all focused right at the end of the sigmoid and rectum.  I’m not going to cut my entire colon out because the end is infected…and if the infection clears, he wants me to do Tysabri, since Humira made me worse so Cimzia probably won’t work, and the only other option is another biologic being used off label for psoriasis.  Carries the same infection and lymphoma risk as the other biologics.  Tysabri doesn’t carry the infection or cancer risk, but you have a 1 in 1000 chance in getting a fatal brain infection.

Aren’t my choices lovely?  Life offers such wonderful crosswords.  I can’t get the worms to work until I’m off antibiotics.  I can’t get off antibiotics without developing more abscesses.  I could be hopeful, get the infection cleared, temporarily use Tysabri to keep the inflammation down (I’d rather die in 2 weeks then have a long, drawn out death from lymphoma and as a gardener, I’m constantly getting scraped with dirty wounds. ) then reinfect with a larger quantity of worms, come off the Tysabri, and never, ever let myself run out of worms again for longer then just a week or two.

Anyway, I thought I’d share a song with all of you struggling with similar decisions, for everyone who’s ever had their hopes dashed time and time again and had to carry on.  The camera work and recording quality is terrible, but it’s all I could do in the hospital.

Enjoy.

And I’ve been doing a lot better this last week.  I’m sleeping through the night without having to get up to use the bathroom.  Stools are magically solid each time, with little to no mucus, and no blood.  I’m going about 3 times in the morning, and maybe another one in the evening.

Still have pain in my rectum, still not right all the way.  I find out next Monday exactly what’s going on as I have an MR enterography scheduled.

Could the antibiotic/probiotics be working well?  (I upped my probiotic regime after starting IV antibiotics.  I take s. boulardii and VSL #3, 3-4 times a day.)  I’m also taking 4 sulfasalazine a day without issue.  (Except that I’m getting sunburn very easily and have some tinnitus.)

Today is my birthday, and I thought I’d be sicker then this.  But I’m pleased to have solid stools coming out, and even though I’m itchy with yeast and hemorrhoids, I am tolerating more foods and will be enjoying a flourless chocolate cake slice this evening with Coconut Dream ice cream.

I also should add that I started drinking a little raw milk every day.  About 1/4 a cup, and I usually drink it with one dose of my probiotics.  A good friend of mine with Crohn’s swears by it and has better, more immediate efficacy then he got on the hookworms, which he lost after about 9 months.  It’s been nice having a  little in with my black tea in the morning….yum.

So are the hookworms finally helping, was it all the antibiotics/probiotics?  I guess I find out on Monday what’s really going on, and then I get to decide my next move.  (Should I sit with what I have now, go on Cimzia, try human whipworms…oh the choices in the Crohn’s disease arsenal…)

Off to soak in hot tubs, get a massage, and plant sweet pea flowers.  Life is finally good, I’m getting more energy, back in the garden, biking again, building my muscles back from the atrophy of the hospital.  Let’s see if it lasts…

I felt so happy yesterday, no nausea, some energy.  I went for my one hour walk, on the beach, besides the bluest ocean I’ve seen for days, the first day after a storm, clouds billowing out beautifully.  I was still a little loopy from the Benedryl I’d taken before bed (I seem to get Benedryl hang overs), but it just added to the mystery of nature. The ripples on the waves as they’re kissing  the sand is even more impressive when a little wacked out on Benedryl.

Later, I did some long needed gardening, and finally got super tired in the evening.

Although I got up once to use the bathroom last night, it was solid again!  As it was this morning!  I don’t know what’s going on, but perhaps I did have the flu the last week, or maybe the hookworms are in a good place right now with my system.  I’m sure it won’t last, but I’m loving it while I can.

With Crohn’s disease, you learn to milk your good times for all they’re worth.  So the tomatoes all got harvested.  The sunflower seeds collected and dried.  Thai basil seeds saved, teddy bear sunflowers, scarlet runner beans.  I’ve got a little urban farm that we’ve turned into a community artistic oasis, but being sick these last few months has meant cancelling our pie parties, holiday art shows, etc.  In January, we’re going to try to transform our two yards into a neighborhood food mecca, with interns to help plant and maximize our food crops; we’ve got 3 neighbors interested who will transform their lots as well, with the intention of sharing our produce longterm.  We’ve got the apple, plums, apricots, etc, you’ve got the walnut tree, parsimmons, lemons.  We can’t fit it all in our lot, so our neighbors can plant their own trees, and we’ll all share forever.

Of course, we’ll blog about it.  All on www.fairy-talefarm.com

With a chronic disease, it’s hard to start new businesses.  I was offered two jobs in the last 2 months, both extremely exciting.  I had to turn them down, going through the TSO nightmare.  I’ve turned down so many important job offers over the years, I try not to care.  A modeling career, an art school in Florence, an acting gig, the most recent:  pie maker at a very fun and artistic restaurant.

But walking on the beach yesterday, the most beautiful day you can imagine…having had a solid bowel movement, with energy to walk at all!  No pain in my digestive system, granted some mucus came out so I had a wet butt most of the way home, but nothing’s perfect in life…still.  My girls are healthy and smart, so beautiful, well balanced. My older daughter is turning 13 in a few weeks, and she still hugs me everyday.  I have a husband who adores me, and is getting cuter every day as he works hard at his exercise regime.  His rash came back yesterday, little raised bumps that itched.  But he feels fine other than that, no husband hookworm side effects to report yet.

I feel privileged to know about helmintherapy and to have access to it at all.  I love working with Dr. Llamas who calls me now and reminds me not to worry.  It’s so nice  working with  rational and easygoing providers, who answer my questions without paranoia or venom.  And I have hope that these new worms will eventually help; perhaps they are helping already?  I really have nothing to attribute these two days of beautiful health, but I am thankful for them while they last.

And my husband, the chef, is cooking tonight’s dinner, his father, also the chef of the family, helping.  We already celebrated Thanksgiving in LA last weekend, so this is #2!  Not to be afraid of the meal is a blessing.

So to all out there struggling with various diseases, may you too have a few glorious days.  Just to remind you that they are out there, and every day has moments to cherish.  Now I need to get my warm clothes on to greet the ocean waves, then come back to make an apple pie…with almond flour crust…and honey in the filling…with apples from my tree.

Life is good.  At least right now.

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.

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.

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.

I went to an endocronologist, since my Parathryoid Hormone was low from the low magnesium.  It’s normal now after the shots.  She suggested calcitrol to raise the calcium levels for a week (the lowest dose every other day so as not to raise them too fast.)  And added calcium supplements.  So now I’m taking about 800 – 1000 mg. of magnesium glycinate a day.  I tried citrate one night, and that gave me diarrhea.  And 1300 mg. of calcium citrate, along with an iron tab seperated from the cal/mag and a multi vitamin twice a day.

I can’t say I’m much better, and am very frustrated that it is so hard to replete.

I’m also doing transdermal magnesium, supposedly about 200 mg. a day.  I’ll add back in the footbaths, since that seemed to help a few months ago.  I’m hoping to consult with a physiologist or someone with more experience with bowel disease and longstanding mineral deficincies.  My local nutritional MD thinks it will take 3-6 months to replete, depending on absorption.

I’m in my happy week, but I dread the coming menses.  Last month, my PMS landed the week of my cycle instead, with full drenching night sweats and increased anxiety.  But I only needed to use Ambien two nights out of the last 2 months, so sleep is improving.  I haven’t upped the Celexa; still at 20 mg., but it will be a happy day when enough magnesium enters my cells and I don’t feel a constant background of jitters, twitches, tics, and worry.  Sometimes I wonder if I should just go to 30 or 40 mg. to survive the repletion time.

Patience is not my strong point.  I want to be better now.

And I’m dying for a cup of strong, black tea, and chocolate, but that’s what helped me get into this mess, so instead, I have blackstrap molasses tea with Good Earth decaf.  It’s like a gingerbread cookie in a cup, and full of iron, calcium and magnesium!  And I’m taking kelp supplements.  When I’m desperate, I’ll have a cup of decaf with milk, and linger over the scent of it.  I’m so addicted.

I’d enjoy my remission if I weren’t suffering so much.  Sigh.