Happy New Year!!

It’s now been 2 years I’ve been trying helminthic therapy.  I realize this blog is sort of disorganized and my response has been all over the place, so let me just sum things up.  I’m working on a FAQ page which will make it all easier.

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.