I went back to Tijuana on December 28th for more worms. This time I crossed with my husband and Herbert Smith, another Crohn’s patient who’s done a huge benefit to the helminth community by helping create the wiki site and finding and caching every paper written on helminth therapy, as well as sharing his success with multiple websites. Like me, he had a fantastic remission on hookworms, enabling him to get off Humira and eat foods he formerly had an allergic reaction to. His Crohn’s became quiescent. However, he was under the impression that more worms and species were better, so he added 2500 trichuris trichura, and more hookworms, and finally began to regress.
He scheduled a capsule pill cam to quantify his hookworm status, which unfortunately got stuck in a narrow passage, and later, a colonoscopy showed lots of whipworms, in areas of ulceration, so not only were the whipworms not helping, they seemed to be harming those areas of tissue. He took a dose of albendezole and went back on Humira, which helped. Interestingly, his fruit allergies didn’t return. Months later, an iron and ferretin test showed extremely low levels, almost dangerously so, and he discovered he still had whipworms all those months. So he took a day of abendezole followed by mebendezole (with a fatty meal to aid absorption), and started over again.
We met and had breakfast together, then met Garin who drove us across the border to Dr. Llamas’ clinic. My husband received 25 hookworms, I got 10, and Herbert 37. (Just worked out to be what were in the combination of vials.) Strangely, it took double the time than normal (12 minutes instead of 6) for me to feel the itch. I don’t know what that means.
We said goodbye to Herbert and drove back to my father-in-law’s to pick up my children. My husband’s rash looked twice as bad as mine. The itch woke me up the first night and slowly faded over 2 weeks. We were exhausted and sort of sick feeling the first 2 days…
But then, the beloved “bounce” set in around the third day, and I went on to have the most happy, energetic 10 days I have had in years. I was almost giddy with positivism, I felt capable of conquering the world! Or at least the piles of undone projects laying around my property. I weeded great swaths of garden. Wheelbarrowed over 20 rounds of dirt. Moved an enormous brush pile, planted about 1/4 of a 2500 sq. ft. Patch of dirt. Most importantly, I conquered my husband’s 30 boxes of miscellaneous crap that have been sitting on the side of the house that include stuff going back to his childhood – most of it trash.
My poor husband, on the other hand, felt terrible. He was depressed, lethargic. He didn’t want to get out of bed and slept extra, totally unmotivated to work while his whirlwind of a wife transformed the yard. I felt sorry for him. He has only a walnut allwrgy, and about 30 pounds of belly fat he needs to get rid of. The last round of hookworms did nothing to help him. Most importantly, he is my walking resource in case Garin ever goes down, as I already live with the catastrophic result of losing my AIT worm supply when I needed to redose, which ultimately led to this colostomy that I despise.
So the three of us can track symptoms. It’s nice having the comradery of being innoculated on the same day. And the twin burden of having Crohn’s disease, finding a wonderful, natural treatment that makes evolutionary sense, telling the world about your remission, then regressing so terribly you kind of stop communicating. Picking up the pieces and starting over again.
I am 2 weeks in and the high has faded. In fact, I went to the ER a few nights ago because I had a bowel obstruction; that lovely area of my ilium that is scarred and narrowed by past Crohn’s damage got blocked by my reckless choices of nuts and raisins (which I’ve been eating without issue), raw carrots (if anything, will cause diarrhea), and the suspect culprit, raw red cabbage. I haven’t had a blockage in a few years. I forgot how painful they are. It was like labor, I was writhing around on the bed, unable to sleep or get around the pain. We finally went to the ER to get a little opiates and an x-ray. Luckily the fiber made it through, but now I’m sore and frightened, wondering if the area is inflamed (they didn’t check CRP) and chagrined at my dietary stupidity. I should have known better. I’ve had blockages before from raw cabbage. As did my ER doctor, who was born with a narrowed piece of bowel and had to have surgery because the cabbage got stuck. My GI told me about two of his colleagues who had obstructions from arugala and…raw cabbage. I will never eat raw cabbage again.
So here I am, round 13 I think, not including other worm species I’ve tried, hopeful but guarded. Relying on a variety of natural remedies that must work because I’ve got no good drugs left to try.
My last round of IVig is next week; I timed it for week 3 hoping it might help mitigate the hookworm side effects. After that, no one knows how to use it. Do I go on a maintenance dose? Do I just stop and wait and see if the pyoderma returns? (Down to a small bump of white scar tissue, hurrah.) Will my insurance even cover it longterm?
I eat SCDiet, take high amounts of fish oil, curcumin (hopefully the worms will tolerate this…it lowers egg counts so stresses them in some way but doesn’t seem to effect efficacy), green tea extract, l. Glutamine, wellbutrin, LDN, probiotics, hope.
I just want to be well forever, and get rid of this nuisance colostomy, but we shall see, we shall see…