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.

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.

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.

It wasn’t easy convincing my doctor.  I went to a new family practice physician who first I had to educate about hookworms. I told him my main problems now are: anxiety, insomnia, depression, PMS, constant muscle fascillations, tics (in my eyelid mostly), muscle cramping, and occasionally I lose feelings in my hands and feet, and tetany.  I even went to the UCSF chief nuerologist last year to get checked out for all the nasty diseases; my brain MRI was normal, my EKG was normal.  He sent me off with a “tincture of time” prescription, since I suspected the iron shots or the hookworms then.  Never did he mention low minerals.

I finally asked my doctor to do the Red Blood Cell magnesium test, which is a blood test that is more accurate then just a standard serum blood test, which always shows normal unless you’ve got hypo or hyperthyroid, or major kidney disease.  We also did a 24 hour urine test (though I read it was useless and we should have done a loading 24 test, where you test your urine for 24 hours, get a magnesium shot, then test how much you retain.)  He wouldn’t do this for me, which was very frustrating.  I also did a buccal scrape test through InterCelular Diagnostics, which is supposed to be the gold standard in mineral testing.  So these were my results:

24 urine test normal.  Buccal scrape showed only high phosphorus, everything else normal.  But the RBC magnesium test was pretty low, and my PTH (parathyroid hormone) was extremely low, which can happen when one is low in magnesium.  At last!  Some answers!  All my symptoms happen when one gets low in magnesium, and probably calcium as well.  (We didn’t test the calcium.)  I first ruled out thryoid issues with all the thyroid tests; all normal, thank God.  And then I had to convince him to give me twice weekly mag shots, which he at first wasn’t going to do, so I asked,

“What’s the disadvantage?”  He said only 50% was retained, and not for very long.  I said if I could get 50% for a few days, and did that twice a week, that was way more than I’d get in orally, and couldn’t we just try?  I’m willing to come, get a painful shot, just to feel better, so after calling the OB-GYN practice (magnesium is routinely given for preeclempsia in pregnancy), he doubled the dose, and gave me a shot.

I can’t say there’s a noticeable difference, except that I’ve had loose stools and a lot of gas the last few days, but I also increased my other supplements, so don’t know what’s what.  So now I’m trying to figure out how to best replete, which is conflicing.

Some sites say not to take calcium at all, that it interferes with magnesium absorption.  Others say the two are necessary together.  Some say magnesium citrate in powder is the best, others magnesium glycinate.  I’m taking glycinate; I’m up to 600 mg. a day, and I don’t think it’s causing any worsening of my stools, which are loose to begin with.

Trying to figure out when to take the calcium, and fitting in my iron supplement has been a challenge.  I’m also taking kelp, drinking 1 tlbsp. of blackstrap molasses tea a day, and am trying to eat more pumpkin and sunflower seeds, greens, and nuts.  I cut out black tea completely, since I don’t think it a coincidence that this all started when my black tea consumption went up.  The tannins block magnesium and iron absorption, and the caffeine acts as a diuretic, flushing out minerals.  So it’s out for now, much to my dismay.

I don’t know how long it will take to replete, whether the worms are influencing mineral status (I’ve read some reference that certain worms can deplete magnesium; anyone have definitive answers?), and whether the shots will be much use.

But at least I have some answers, something to track, and not some mysterious terrible new disease that I need to solve and throw more psychiatric medications at.  (The Celexa pretty much helped for a month, then stopped, but I’m still on it.)  This is my PMS week, when the anxiety, depression, and insomnia come back… we’ll see how I fare.

I’m still doing transdermal magnesium, but not as much.  It worked wonders for me a month ago, but seemed to not help so much this last month.  But I’m still taking magnesium sulfate baths, and spray my body with the magnesium chloride after I shower, and do a foot soak every day or so.

If I could just get my bowel movements down to formed, 1-2 X a day, I’d be ecstatic! I know I should probably return to strict SCD; I’ve returned to it maybe 80%.   I think it may be time for more worms…

Every day, there are more and more “waiting for the cure” searches, meaning, people know the website and are typing it in full.  Yet I get very few comments on this site, and many of them are from the same readers.

So I’m wondering, how do you know about “waiting for the cure?”  Is your doctor telling you to check it out, is it something you’ve stumbled upon after reading or seeing the news about worms?

You can contact me privately by clicking on the contact link, if you’d rather no one knows but me.  Or you can post a comment anonymously by making up a name and using a false email.  (Does that work?)

I know most people are afraid of other people knowing they are trying or even interested in worms.  I have no high profile career to lose, and want everyone to know about this worm option, so I’ve sacrificied any notion of privacy and just used my real name for the CBS piece, the yahoo message board, etc.  I haven’t used my name in this blog, but most people know who I am regardless…

Just wondering what everyone else is thinking these days of worm therapy and how you got here.  No real reason but curiousity and a dose of vanity sprinkled with paranoia…

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.