Summary of Treatment

I have had ileal-colonic Crohn’s disease for 22+ years.

I was infected with 10 hookworms (presumably Necator Americanus, though species and number wasn’t identified) on December 18,  2007.  I had a high CRP and ESR rate, was 138  pounds (I’m 5 foot 10.5 inches), couldn’t eat much but blended foods, had severe abdominal pain, diarrhea at least 5 X a night and another 5 X a day, and had failed the 5ASA’s, 6MP,  Flagyl, Cipro, Remicade, Humira, LDN, and numerous alternative therapies.

My initial reaction was 100.3 degree fever on days 3-7, increased diarrhea, and increased pain.  This was during the first week.  By week 3, my ankles swelled (edema) and I had reactive arthritis, first in the ankles, then in all joints, confirmed by my GP.  This lasted weeks 3-9.  But also, by the end of the first month, pain reduced in the bowels to almost none, though stools were stool loose and all over the place.  I could tolerate a few new foods, which was wonderful.   I began to gain weight.

I added 2 to 3 worms weekly or every other week from weeks 10- 14, for a total of 8 doses and 37 worms.  However, the added doses started to cause regression and diarrhea.   By week 16, I had gained about 20 pounds, could eat a lot more food, and looked so much better.  My CRP and ESR were normal for the first time in years, and my doctors and I were very hopeful.  But the new worms caused me to slowly regress, and by the summer, I had lost efficacy.

In October, I had dental work, (just a few fillings) and by December, pain was back, I was back on soft or blended foods, and my CRP was beginning to rise, not as bad as pre-hookworms, but on the way.  I did an O&P test and it was negative, my EOS had fallen to 0, so somewhere between months 4 and 12 I had lost my worms.

I reinfected with 10 more hookworms in February of 2009, and within a month, my CRP was back to normal, and I felt no pain again.  I was starting to get some better stools, and I gained the weight back I had lost.  I was very anemic, however, from the previous Crohn’s, and since I didn’t tolerate iron tablets in the past, I went for iron shots, weekly, for about 6 doses.  During this time, I started to develop numbness in my hands and feet, tingly lips, dizziness, ringing ears, and all over body twitching. These new symptoms were frightening.  I had a brain MRI, nerve conductivity test, but they were all normal.  I suspected the iron shots, but we didn’t know for sure, so my neurologist advised a “wait and see” approach.  (Note: 2 years later I was diagnosed with magnesium deficiency, and transdermal magnesium chloride is reversing these symptoms.)

Despite the normal CRP, I was still having mucus between bowel movements, and sloppy stools.  I still couldn’t tolerate a lot of fiber well, but I was eating everything, and not having much in the way of negatives from it, except perhaps diarrhea here and there.  But I started to develop anxiety around my PMS week, and by the summer, I was having sleep issues during this time.  I tried Lexapro at the end of summer at full dose, but it increased my anxiety, so I dropped it.

I was doing egg counts this whole time, and had a steady output of eggs.  The egg counts began to decline after the Lexapro experiment, and my symptoms were getting worse, so we reinfected with 10 more worms in late September.  I got the usual one week elation, but then my stools were kind of sloppy, and I altered my diet to try to control the frequency and diarrhea.

A week later, I got pregnant.  The hormone change (and the undiagnosed magnesium deficiency) meant I couldn’t sleep and I became very anxious, with physical symptoms of anxiety like beating heart, shortness of breath, etc.  I went a week with either 1 hour or a little more of sleep a night.  By week 6 after the hookworm infection, my stools started to improve, but my emotions did not.  I went on Celexa, but this time very slowly, and used Ambien to sleep.  I found out that the pregnancy was not viable, and waited 5 weeks for a natural miscarriage to occur, which was all very distressing.

I had a natural miscarriage just after Thanksgiving, but a piece of tissue remained (unknowingly) so I bled for an additional month, and had a huge bleeding episode, going from 13.2 hemoglobin to 9 in 2 days.  I was still using Ambien and Celexa, which was helping enormously.  The Crohn’s was back to where it had been: normal CRP and ESR, 2-3 stools a day.  My skin was clear, I was now at 160 pounds, I started eating more variety of foods, I was just dealing with the twitching, numbness, and anxiety instead.

The miscarriage complete, I learned meditation, progressive muscle relaxation, and other ways to combat the symptoms I was having,  the  Crohn’s symptoms remained stable, with normal CRP.  I finally did  red blood cell magnesium test and found out I was quite low.  I began oral supplements, but they caused diarrhea past 400 mg., and weren’t helping.  I tried IM magnesium shots, but they made me feel better at first, then almost magnified my symptoms, so after 6 weeks of them, and no improvement on the RBC magnesium test, I stopped.

In March of this year, at 6 months post infection, the Crohn’s symptoms began to regress, and my CRP started to rise.  More mucus, more loose stools.  I was up to 165 pounds at this time, though, and was eating most normal foods, but I went off gluten and became much more strict to try to reverse the Crohn’s symptoms.  My egg count was steady, so there was not a drop off of worm population it seemed.  At this point, Jasper was outed by the FDA, so no one was able to get worms.  I was planning on redosing with hookworms and trying trichuris trichuris.  I tried to incubate my own hookworms, planning to reinfect myself with 10 more worms, but my scientific methods were inadequate, and I had a series of frustrating failures.

My egg counts began to drop, and my CRP was steadily rising, from one point above normal in March to 10 above normal in May.  Symptoms were worsening, with increased abdominal pain, and sensitivity to foods, and stools at least 4-5 times a day. I was having increasing mucus after and between bowel movements, and  I began waking up in the night at least once to go to the bathroom again.

I did an MRendoscopy in June, which showed a perfect small intestine, scarring and some inflammation in the ileal-cecal valve, and a very inflamed sigmoid colon, the wall of which had eroded through, causing a fistula from colon to ovary, though it hadn’t opened yet.

AIT denied me service as a client, later citing that I did not fulfill their contract by providing a clear and concise account of my experience.

I finally found an alternative hookworm source, and reinfected with 15 worms (species and number not confirmed) on June 26th.  I felt better for a few days, but by week 3, all hell broke loose, and I had liquid diarrhea, lots of pain, and bleeding.  I decided to go on Prednisone on week 3 at 40 mg. for 5 days, reducing by 5 mg. every 5 days.   Within 4 days I had solid stools, but they hurt coming out, and I had internal and external bleeding hemmerhoids.

Egg count was down to just 2 eggs weekly until week 9, then it popped up to about 700 epg.  I started feeling much better, increased energy, solid stools, and I was tolerating more fiber and foods again.  I was 165 pounds, and my skin became more clear, and I was able to do a lot of physical exercise.

I decided to add TSO to see if this would give me colonic improvement and buy me time until I could find another source of TT.  The first dose was noneventful.  Before the second dose, I was having mostly solid stools, coming down from the Prednisone.  I was at 5 mg., still having a little  pain in the anus, but stools were down to about 2-3 a day, mostly solid, depending on what I was eating, though they were getting a little less so then when I was on the high doses of Predisone.

The second dose of TSO, I had a solid stool in the morning, but that night, I was in the bathroom multiple times.  I had drank a few glasses of wine and ate some things at a party, but I had done that the week before without issue.  The next day, I had total liquid diarrhea, and a low grade fever, and lots of abdominal pain.  I wasn’t sure if it was the TSO or the flu, as my daughter was sick.  However, she had a fever for only one day, with no other symptoms except a headeache, so it was strange I was reacting so differently.  My other daughter caught the flu with the same symptoms, just one day of fever, no bowel change. I had 100.2 fever for a few days, then it was down to 99.8 for another week, I was nauseous, but finally, after a week, I had a solid stool again, and began tapering the Prednisone again, from 7.5 mg. to 5, without incident.

I waited 3 weeks before reinfecting with TSO since I had a big party to prepare for and couldn’t risk getting worse.  I still had some pain, but was having some solid stools, mostly soft mounds, about 3 X  a day, but lots of mucus.  I had a lot of energy, though, and was very active.  I came down to 2.5 mg. of Prednisone without issue.

The last TSO dose made me nauseous later in the day, then the second day, I had explosive diarrhea and severe colonic pain.  I was off the Prednisone at this point.  It’s now been a week, and I am still having total liquid diarrhea and terrible pain.  At this point it became clear the TSO was causing a more violent negative reaction with each dose, so I stopped it.   However, a week went by, and symptoms were progressively getting worse, so I reluctantly went back on Prednisone to abate the flare.  I am now 3 weeks past that TSO dose, have lost 10 pounds, and am on 40 mg. of Prednisone, and stools are finally forming again.  I haven’t checked yet if I am still hosting hookworms.

So here I am, frustrated and frightened, not sure what to do next.  The worms worked really well while I could keep enough inside of me, but once their numbers dropped, the Crohn’s went right back to being very bad.  It seems if I kept reinfecting every 6 months with just 10 worms, side effects were minor and improvement quick.  However, waiting 9 months to reinfect after CRP and ESR had risen, and trying 15 hookworms led to the second worst reaction to date, besides the TSO.

I forgot to add that I started transdermal magnesium 2 months ago, two baths a day, with at least a cup or more of magnesium chloride in the baths, and the symptoms of magnesium deficiency are improving substantially.  Anxiety now is gone, I am sleeping without aid, the twitches are reduced by 70%, and the numbness and tingling is gone.  I become more symptomatic  if I have a few days of diarrhea or sweating.  RBmagnesium test has gone up, though it’s still not normal, but it is close to the bottom end of normal.  I plan on continuing the baths for the next few months, until I can get confirmation both in symptoms and blood test that magnesium is normal.  I am now on 3/4 dose of Celexa without issue, with plans to wean off of it very gradually as I improve my magnesium status.

All in all, amazing progress in the first and second year, third year sucks.  I still have hope in helminth therapy, but I had no idea it would be such a hard ride.

My plan is to add 10 more hookworms at month 5, provided I still have the existing population.  My hope is I can come off of Prednisone and see if the new worms plus the existing ones are enough to keep my CRP and ESR normal again.  I may add topical medication to the anus and sigmoid colon to control the urgency and mucus.  One day I may try TT, but not until I can reach longer term stability.

I plan to post my blood tests, photos of my rash, etc soon to document my experience.

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