Necator Americanus: Superfriend!

I am going to Dr. M.P. at the Department of Infectious Diseases today.

He is an marvelous clinician and an exceptional human being. A mensch. I ran into him about a year ago in the dollar store and although I did not want to bother him while he was living his private life, I thought it behooved me to mention to him that we would be discussing hook worm when we were to meet a few weeks hence.

I got to his office armed with a pile of scientific literature, courtesy of Jasper, but Dr. M.P. was flummoxed.

“I thought you meant you had hook worm that you needed to be treated for.”

Yea, well, see how I am.

The difference between doctors and patients, and the reason there is often such an emotional disconnect there, is that Doctors consider themselves the expert on your disease. And they are; they have worked long and hard to become so. But they do not often understand that you are also an expert on your disease, in that you are living it every day. You understand its moods and vagaries. When all the literature says do not eat lettuce, for example, you begin to understand that you feel better if you eat just a little bit of lettuce. Some doctors can not accept this, they have the training, they paid their dues. They do not fathom the extent to which you are paying your dues every day.

M.P. is not one of those, he takes the patients role in the disease seriously. Never the less, I expect that he too will have trouble wrapping his mind around the hook worms. For what is most easily forgotten is that it takes an extraordinary amount of bravery to live with a disease, a kind of madness that prevents you from hiding your head and giving up, the kind of madness wherein anything is possible. Sure the doctor is the expert, but as I have previously noted, at the end of the day the doctor can go home. For the afflicted the disease itself is home. Mornings, I do not live with the pain, I live in the pain. If I am going to screw my courage to the sticking place and accept that surgery might be necessary, it is no great leap for me to consider infecting myself with parasites a possibility as well.

These doctors, (and here I do not intend to include Dr. M.P.) look at me with the same horror when I say Necator Americanus, that I look at them with, when they say “Permanent Colostomy.” I was at my general practitioner’s office last week and when I revealed the spot on my arm where the worms entered. He did not come in for a closer inspection, but backed up across the room. It was funny, actually, I felt for a moment like Typhoid Mary. So what is one to do? Today we shall find out, when I gently attempt to show the best Infectious Diseases specialist in the city that what I have done is not madness, but a rational response to an irrational situation, and that not only am I qualified to make that decision, I am the sole acknowledged expert in my disease. Not hypothetical Crohn’s disease, but the disease I wrestle with every morning of my life.

I will know the outcome at 2:30, you shall know somewhat thereafter.

You can’t imagine how strange it was to sit there, listening to Radio Lab interviewing Jasper Laurence about hook worm, while on my arm itched a patch of Jasper’s worms.

I guess I always figured they were his worms, both literally and figuratively, but thought it best not to ask too many questions. Still, Jasper my friend, your continued wellness fills me with the spirit to go on. Any idiot can be an optimist, it takes a special kind of fool to do something so ridiculously proactive as taking hookworm for the cause.

This addresses another issue I’ve been considering, quackery. I have precious little tolerance for it. Almost everything in alternative medicine, so far as I have seen, is magical thinking. From the ‘power of prayer’ to the role of vaccination in Autism; there are no methodical, scientific studies to back up the hype. But for the “Old Friends Hypothesis” there is a paper trail. Here in, infact, might be found the one problem with Autoimmune Therapies that I have; Jasper has accumulated for himself quite a bit of anecdotal evidence, but not much in the way of reproducible results. I would suggest, however, that this is not his fault. The company is still very small, there just are not enough cases of any one kind to make a statistically significant sample. Further more, I must say that Jasper seems to go out of his way to suit the needs and desires of each client. This makes for so much personal variation in treatment that it becomes difficult to qualify results over a large sample. Then again, Jasper Laurence did not set out to start a research company, he looked at the research and decided that it was within him (if you’ll pardon) to help us.

Yet it stuns me each & every time I encounter someone whose disgust at hookworm therapy is such that they become violently offended. I suppose that such a visceral response can only come from the fear that N. americanus will crawl from me to them. They accuse us of being irresponsible, a public health hazard, a menace, they simultaneously and just as vociferously accuse us being deluded, naive morons; two conditions which could not rationally exist simultaneously, If the worms are a sham, we are all in very little danger. Yet there is something unsettling about that ultra close up shot of Necator americanus’ sharp little teeth looking for the arch of a tender foot. But that does not make us mad, or deluded. The medical establishment is willing to give us anti organ rejection drugs, used for transplant patients; the antibodies of mice lab grown biologics of humans and other animals; steroids until our connective tissues fall apart; Imuran, Methotrexate, Humyra, 6MP; toxic drugs that cause terrible and occasionally fatal side effects. And beyond that take out our digestive tract little by little, curing nothing, until we have no gut at all. In the face of this, the risk of anemia is actually a kind of self preservation.

So my worms arrived yesterday, at 10:30AM. Both Necator americanus and Trichuris trichiura.  There was very little itching under the Americanus bandage, and the trichiura solution tasted mildly bitter. And I see that it is now October 11th, exactly one month from the day I lost the last batch, but I hope for the best. My fellow travelers have all told me that it is easier the second time around, the worms and having gotten acquainted, are old friends, so to speak. I’ll keep you updated, about as well as I have been so far, because as a society and a civilization, we are all on this journey together.

Well, I made it to Marc’s Grocery Store.

I stood there, in my bedroom looking down at my chest of pills, having taken a dicyclomene, and wondering what more I should do. Should I wait? I’d been waiting since this morning; it was already 2:30, if I wasn’t going now, I wasn’t going at all. The dog assumed I knew what I was doing and was at the door waiting. I figured she knew something I didn’t, so acting entirely on impulse I took one sixth of an oxycodone and we walked out the door.

I was fine.  It was lovely.  I had a smile for all my fellow shoppers and a kind word for my cashier. And I will surely pay for this tomorrow.

I don’t take Percocet, or its sister Oxycodone, for pain any more. I take them for fear. I learned my lesson about pain and pain pills last March, on my spring trip to the Hospital; for it is opiates that brought me there in the first place. There is a stricture in my descending colon, about 35cm in. Last winter it had become bothersome so I was taking pain pills, about one a day, by quarters. But the pain just kept getting worse. By the time I was ready for “Club Med” every time I used the bathroom I felt as though I was being torn apart. My mouth would water, tears would run from my eyes, I would gasp as my lungs would lock up from the pain. I would go, and then I would sleep, sometimes for an hour or two, until the pain medication kicked in. Then 10 or 12 hours later I’d do it all over again. The intervals between got shorter, the pain got worse, then the fevers came and by late March I was in the hospital.

There on 11 Doan Hall they are generous with their pain medication. They were happy to give me Demerol, Morphine, . . . Oxy-what ever. But I had seen doctor P. before I went in; told her I was not feeling so good and I was running low on pills.

Her nurse, M. said “Dr P. does not write prescriptions for pain medication.”

“I am not a drug addict” I said in in all indignation.

“She knows you are not a drug addict” M. answered, “Dr P. believes that pain medication is very bad for people with Crohn’s disease, it aggravates the colon and makes their condition worse, and she will not prescribe it.”

There were two ways I could have dealt with this information; one of them was to give her the benefit of the doubt.
When I got home I put the last few tablets away and waited to see what would happen. After a few unpleasant trips to the bathroom, the swelling began to go down and it got less painful and difficult by the day. That was lovely, but that was not the surprise. No, the surprise was opiate withdrawal.

My body had grown used to a certain level of oxycodone, approximately five milligrams every six hours, and its response to being deprived of that was unmistakable. What hurt? Nothing, the pain was entirely existential. It felt as though my chest has been pierced by a hollow shaft arrow, and the blood was running from my heart, my chi was draining from my chest to a puddle at my feet. Oh, I thought, this is what it feels like when you die; when someone strips the paint from the walls in your psyche, when you are not sure where you end and the white noise begins.

I’m not sorry I went through it. I learned a few very important things. I learned first that I am not infallible, I am not bigger than Opiates, and that even a little is addictive. It’s not the amount, it’s the consistency with which you take it. But mostly I learned what it is to withdraw. What it means to feel for a little while, 48 hours, that you are having a psychic break down. Then to come out the other end feeling whole again. Like Odysseus I’d heard the Harpies. They have nothing to recommend them, but for the fact that many who do hear them do not survive to tell the tale.

For a long time afterwards I did not go near the Percocet, and it wasn’t pain that was ever going to make me capitulate. That is a deal with the devil you can not win. But colon spasms are caused by emotional and physical stress, and if you are already having spasms there is nothing so stressful as having to go out, into the world, away from your safe bathroom, in you quiet house, then walk the long isles of a grocery store pushing a heavy cart. Synthetic opiates tend to put you in a much better frame of mind if you have to do this. And if your colon is not in bad shape to begin with, and if you don’t do it again tomorrow, or the next day, or the week after that; and if you are going to be brave and not mind a little pain and blood for the next 36 hours, then a little Percocet may be useful to you. But you must remember, it is using you just as you are using it, once let in, it will call your name every chance it gets, and it is absolutely, positively not your friend.

I want to go to the store.

I need to go to the store.

I am afraid to go anywhere.  I am held here, by a cold hand around my gut

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