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8. the second dose

January 27, 2011

It was a lovely little getaway. Lisa and I settled into our hotel, and to my great relief, the FedEx package was waiting for me when we got there. I went immediately up to my room and got to work. I read the directions (real directions this time!) which said very clearly to carefully hold on to the lid of the vial so that none of the liquid would splash out. Of course, I did exactly what the instructions said NOT to do, and a couple of drops from the vial went straight into my eye!

I put it out of my mind and completed the task, emptying the vial onto the band aid and then firmly fixing the band aid to my fore arm.

Almost immediately, my fore arm started itching like mad. A good sign! I emailed X and told him what I was experiencing. He emailed back quickly and told me that was a very good thing–it means the worms are alive and that they were even at that moment burrowing into my skin. Soon they would be catching a free ride in my bloodstream. First stop, the lungs! Next stop, the small intestines!

Task completed, Lisa and I went out site-seeing. But of course, I obsessed about the drops that splashed in my eye. I had nightmarish visions of hookworms setting up camp in my eye, destroying it, eating it up from the outside in. I decided that, since my eye did not ITCH, I was being ridiculous. Eventually, I forgot about it and actually did enjoy myself. Nice.

Now, the waiting again.

7. the first test

January 26, 2011

Of course, I didn’t find out that the worms were dead for some time. X told me to wait two months, and then to send a stool sample to England to be tested. Our honeymoon was in late July, so on the first of October, I went to my doctor and asked for a parasite test. He set me up, I got the kit, and used it to send my sample to England. Then I said, “What the hell” and went back to the lab, telling them I lost the kit, got another kit, and submitted my test for my own doctor to evaluate.

Yes, I lied. It seemed harmless. No, I have not yet confessed it. Except to you, dear blog reader. Absolvo me?

Anyway, I put it out of my head, because I didn’t want to obsess about it, except that I was. In the meantime my cycle of symptoms continued, although, I allowed myself a glimmer of hope, here, because they DID seem a tad bit lighter than usual. Within days I got my results: negative. No worms. My doctor’s test confirmed that I was still worm-free.

I realized that in 99.9% of cases, this is good news. However, I was crushed. The only thing I could think of was that the Italian government irradiated the FedEx package, as a normal part of their postal security protocols, killing my little guys. Poop. Not going to try it in Italy again, obviously.

I called X and told him what happened. He sympathized and told me they would send another shipment as soon as I was ready for it. Lisa and I were planning a little getaway anyway in a few weeks time, so it seemed prudent to use that time for worm retrieval.

Yeah, it was a setback, but it only served to make me more determined than ever. The sickness was not abating. I was going to get those worms if it was the last thing I ever did.

I began packing my bags.

6. the first dose

January 22, 2011

I wanted to get started sooner rather than later. Lisa and I were getting married, and we would soon be in Italy. Would X have the worm FedX’d to our hotel room in Rome? He would.

Unfortunately, things did not go so well. I worried the whole time we were traveling about whether it would be there when we arrived, and started a course of prednisone about five days before we were due to arrive in the Imperial City. Finally, we got there and…no FedX package. I panicked, called X and had a bit of a hysterical fit.

He called back, apologized profusely, and promised to send another dose. Only, if we were lucky, it would arrive the night before our flight. I had hoped to have it while we had several days ahead of us in one place, so that I could adjust if I reacted badly to it. Oh, well, I was going to travel whether I was sick or not with it, now.

The package did indeed arrive on our last night there. Inside, I found a 2×2 band-aid, a dropper, and two tiny vials of what looked like water, about the size of my thumbnail. One of the vials had “C” marked on the lid.

There were no instructions in the package. Arrrghghgh!!!

I hastily called X, who apologized for there not being any instructions. “I emailed them to you,” he said. But no email had arrived. Sigh… So X gave me verbal instructions, which I followed to the letter.

I opened the “C” vial, and pulled water out of it with the dropper. I squeezed out the liquid onto the pad of the band-aid. When it was empty, I did the same with the unmarked vial. Then I put the band-aid on my forearm. Then I went to bed.

I thought about the little wormy fellows now burrowing their way into my bloodstream, and felt so excited I could barely sleep. I felt so warm towards them, so hopeful.

Too bad they were dead.

5. setting up the treatment

January 22, 2011

The phone rang and I picked it up. It was the guy from NPR, I’ll call him “X.” He was friendly, warm, vulnerable, and he sounded completely sincere. He listened to my story and told me that, indeed, he had encountered plenty of folks with precisely my problem, and that they respond well to the worm. He told me about one guy who had become to reactive to things that he was reduced to eating only a synthetic powder. Now, a year after receiving the worm, he was eating normally.

“So, what’s the downside?” I asked.

X told me that it might not work. About 25% of folks are not helped by the therapy. Also, I might have a terrible reaction to the worm. He told me that I would experience a rash, itching, and might experience nausea, headaches, and a frightful litany of other, scarier reactions. But, he told me, while the rash and itching are experienced by everyone, the worse reactions are exceedingly rare. A certain subset of middle-aged women, mostly with fibromyalgia, have the worst time of it. Many of them are still helped by the treatment, but the introduction of the worm is a difficult time for them.

Yikes.

He also said that they found that people who are taking 20mg. of prednisone experience no itching or rash, and actually have a hard time believing that they have been infected. I decided that was the way to go.

He told me the cost–$3,000. Not cheap, but the price wasn’t for a dose of worm, it was for 5 years of treatment. That means as many doses as it takes, constant monitoring of worm level, constant access to experts for questions and problems, etc. Not bad, when you consider it might just work. $3,000 to not be in constant pain every day? That’s a bargain. $3,000 to be able to eat bread, drink a glass of wine, take an advil when I have a headache?

Count me in.

4. getting the worm—and how it works

January 13, 2011

Of course, having made the decision to GET the worm, I had to discuss it with my fiance, Lisa. She knew how badly I was suffering. She was a doctor–a vet–too, so she was as mystified as my own doctors as to what was causing it all. I told her about the NPR show. She said she had heard of this theory, she called it the “cleanliness” theory. Here’s how it works: humans and hookworms co-evolved over millions of years in a symbiotic relationship. We gave them a place to live and food. And what did they do for us? Regulate our immune systems. It seems the worms secrete a chemical that supresses the immune system JUST enough that it doesn’t eject them. But not enough to endanger the host. Thus the worm is constantly monitoring the hosts immune system and secreting just enough of the chemical to keep itself and the host safe. This actually functions as a regulatory organ of the immune system, and since we already had one in our systems–the worms–we did not need to evolve one independently.

Thus, when humans got “too clean” starting in the early 1900s and automatically (and wrongly, it turns out) assumed that any parasite living in our intestines must be a BAD thing, they got rid of them, unknowingly amputating the only regulatory organ for the immune system that we have.

And what was the result? Instantly, people started having allergies, asthma, rheumatoid arthritis, MS, and more recently Crohn’s disease and fibromyalgia, and many, many other out-of-control immune system maladies.

But what if you re-introduce the worm? European studies show that in about 75% of cases, the diseases disappear. (To see medical journal articles, click on http://www.springerlink.com/content/j8q17038003747q2/)

“I need this worm,” I told Lisa.

She thought about it for a minute, and said, “I’m not excited about this idea. Ordinarily, I’m not trained to think of hookworms as a GOOD thing. But I know the theory. It’s worth a try. If it doesn’t work, you can take a pill and in 24 hours, the worms will be gone. I say try it.”

THAT’S my girl. I went to the web. I searched for “hookworms” and the name of the man in the NPR show.

I found him.

3. enter the worm

November 21, 2010

I struggled like this for a while, until I heard a podcast that changed my life. I was listening to an episode of NPR’s “This American Life” where they talked with a guy who had such bad allergies he had become non-functional. He was visiting relatives in England when he heard a BBC report about some experiments with hookworms. He asked the doctors to try it out on him, but they refused. So he went to Africa and walked around in the latrine grounds until he was infected. A few months after his infection, “poof!” all his allergies disappeared. So he started making hookworms available to others as well.

As soon as I heard it I knew. I had to get hookworms, too.

To hear the NPR show, click here:

This American Life: Enemy Camp

2. gluten intolerance

October 1, 2010

About two years ago, in hopes of addressing my “Mystery Illness” I decided to try one last thing before offing myself. I paid for a very expensive naturopath, and I laid out my whole story before her. She said, “I’ve seen this before, and I can help you. Your liver is shot, and we have to very carefully rebuild it.”

This was complete bullshit. My liver is fine, but I didn’t know that then. Desperate, I did as she said. As part of her treatment, she put me on a very restrictive diet: oatmeal, fish, brown rice, and steamed vegetables.

I started to feel better. Not well, mind you, but better. I started to add other foods when she told me to, and the Mystery Illness returned. Eventually a friend said, “You know, it sounds like a wheat allergy. Why don’t you stop eating wheat for a while?”

So I did. I felt better and better. So I gave up gluten entirely (no oatmeal, in other words, or soy sauce). The severity of the Mystery illness dramatically diminished. It wasn’t gone, but it was definitely better. Livable.

That was about a year ago. I have been totally gluten free since then, and I have felt so much better, it’s hard to believe I came so close to ending it all. Again, I still have bad days, but it’s so much better it’s amazing. I feel like it was a miracle.

Needless to say, I stopped going to the expensive naturopath. She didn’t have a clue, either.