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This Blog

It has been brought to my attention that this blog is not encouraging helminthic therapy, but instead is harming people in posting my experience and the studies I come across.  My intention was to blog my failure or success with helminthic therapy, as I was one of the first Crohn’s patients to try it.  It was very exciting at first, when things improved so dramatically.  I felt I owed the IBD community an honest report of what it is like to try hookworms, since I didn’t have anyone else doing this before me, and would have welcomed what to expect.  Also, my doctor was very interested in my progress, and it was a way for me to corral the information I came across, so that other people could learn from it.  It seemed at the time that this was going to be an option for very sick people to get well, and the more I could do to help further this therapy, the better for all those suffering.

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?

So, my symptoms have been worsening for a while; a month ago, I had a slightly elevated CRP, but now it’s shot up to 12.8 (<5 being normal).  I’m having pain now daily in the ilea-cecal valve, a lot of mucus, night sweats, and loose bowel movements.  I did an egg count yesterday, and got 1050 epg, and that was with a large air bubble in the slide, so it was more or less similar to what it was before.  So unfortunately, this regression is not due to my worms dying.

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.

So, two weeks of twice weekly magnesium intermuscular shots, and my RBC magnesium is a point LOWER!  And I started to show signs of calcium definciency; tingly lips, numb hands and feet.  My twitching seems slightly better though.  Two of the 6 seemed to give me a day of relief.

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.

I have extremely low magnesium.  Yeah!  I say yeah because FINALLY I have answers to what has been plaguing me for over a year and a half; I suspected low minerals, but didn’t pursue either testing or suppementation aggressivly enough, so now, perhaps I will finally start to improve! Read the rest of this entry »

This blogging software allows me to see how many pages are visited each day, and what search terms people use to find it.  There’s been a steady increase of traffic over the year, with some days peaking at almost 200 views!  At first the Radio Lab piece got the most traffic, now the celiac trials are bringing in a lot of interested people.

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…

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