Necator Americanus: Superfriend!

10/31/09

A friend said, not long ago, that she’d assumed I’d been sick all my life.

“No,” I answered with some surprise; “I was a perfectly well person until I was thirty.” Even then, Crohn’s disease was less than a minor inconvenience for several years. Which is to say, I was fine when I climbed this mountain, now I have to find the strength to climb back down.

All my young life I expected to be a traveler, an adventurer; I got a BA in Anthropology primarily to learn about the most remote places and people in the world, before I visited them. I dreamed of standing on the plains of Kenya, watching the Wilda beast wandering by, walking the electrified canyons of Tokyo, eating locusts and guinea-pig in Guatemala. But it never happened. I squandered my twenties, in all honesty, so I can’t blame everything on the disease, but I will tell you this: I do not look at the adventuring class with jealousy. I have my own road to walk and it is as grueling as a trek across the steppes of Mongolia. And although I will not achieve fame or notoriety for the struggle I face every day, no books will be written about me, or movies made, I understand that living this is a feat equal to any adventurers struggle. I wanted a test of my character and I got one, the scenery is not so spectacular, agreed, but the oxygen level is so poor at the top of Everest that, I have been told, it’s rather difficult to appreciate the surrounds. Then having climbed, you are nothing more than another statistic, without having retained the strength to climb back down.

I don’t even know where I am on this mountain, this trip came with out a map or altimeter, the cloud cover is dense and I can’t see a god damned thing.  But I feel as though my oxygen canisters are still full and for the next while, at least, I’ll be alright.

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

.

B & I took the dogs for a walk on Saturday.

I couldn’t sit here a moment longer, trapped in the house like an invalid, trying to keep busy doing nothing so I don’t drive myself crazy between trips to the bathroom.

We walked around Antrum lake and let the dogs swim and frolic while I hoped that I’d have the strength to make it the whole way around. I did, and it was the nearest thing to a hike as we’ve had in years. But today I feel as though a mule has kicked me in the abdomen, as my intestines work on digesting tan-tan sesame noodles

So I am depressed and angry today. As summer draws to a close and the sun and the rain chase each other across the sky, I don’t dare eat anything and still, I don’t feel that I can safely go any where. I want to go to the Kroger, there’s cake there. My prednesone wants cake. I need to go to the psychiatrists office, his nurse is holding some medication samples for me, but I’m too depressed to go get my anti depressants.

So I offer you, all my fellow travelers and comrades, this blog entry, a pure wallowing in misery and self pity; because today I can’t stand it, can’t stand myself for one more moment. I am acknowledging in print, the simple fact that I want only for it all to go away.

9/11/09

Finally, after eight hours in the ER and a long afternoon of sleeping in a sunless room, it was decided that I should have a growing abscess lanced by the surgeon. The anesthesiologist was perfectly amenable to an alternative to general anesthesia, no matter what the reason. The IV concoction used for colonoscopy was not used for surgery, she said, but a spinal would work; until she learned in the course of the cross examination, that I’d been having fevers for three weeks.

She brought up the specter of meningitis. worse than worm death, I’d wager. If someone was going to have to die on this trip it was going to be Superfriend, not me.

I don’t feel any differently today than I did yesterday, soreness where the stitches are is similar to the soreness where the abscess was, no fevers, but this room is so hot is might as well be a sauna. But my worms are dead. I have to assume, as the anesthetic tube left a raw spot in the back of my throat.

I am comforted by the fact that my fellow travelers tell me that the reaction to the worms is less with each reinfection. The doctors from Infectious Diseases were comforted by nothing. You never saw such a collection of astonished, aghast, incredulous expressions in your life. I may as well have said that I was going to have myself intentionally infected by some pernicious third world parasite that was the bane of the WHO’s existence. . . Oh, wait, I did. Never the less, I did my best to strongly suggest that they put their prejudices aside, look at the AIT web site and when in doubt, consider how the Small-Pox vaccene was discovered.

All of you who have been chastised by me for Irrational Exuberance, would have been astonished to see me, dander up, wagging my finger at medical professionals. Doctors who were trying to contain their revulsion as I explained that one does not swallow N. americanus, it crawls its way up ones trachea on its way to the stomach.   I might have been amused, myself, had I not been so angry.  Judge me, goddamnit? Like hell you will, as I sit here bleeding while you can go home and eat anything you want!

There’s a rumor by one of the surgery interns, clearly not in the loop, that I might be released tomorrow. I’m grabbing on to that and hanging like a pit bull. I’m going to shake it in the face of every comer. I’ll be leaving tomorrow if I can only just make them sick of hearing me ask. But you’ll know, what ever happens, because I’ll write chapter two of this saga, and tell you what’s happened to bearer of the dead worms.

I don’t know if I’ve mentioned that I somehow lost my GI doctor in an academic shuffle.

Just months after telling me she’d be my doctor until she died, a follow up appointment was canceled w/o my knowledge, and I was given several different vague stories by herself and others. She said something about how we’d hit a roadblock and just didn’t know what to do, so she wanted a different set of eyes on me.  One of the nurses said that she was going to be spending more time teaching and less time in the clinic. The doctor she passed me off to said he simply didn’t know.

I can not ignore the fact that in the meeting we had before the canceled appointment I told her of my decision to go forward with helminthic therapy.

The Doctor that Dr Pfeil left me to, of whom she spoke highly, summarily passed me off to one of the “fellows” in his practice, who doesn’t know me and is rather lacking in interpersonal communication skills. So here’s my question: Does anyone know a good Crohn’s specialist in the Columbus Ohio Area. I’d be willing to go to Riverside (Ohio Health) or The Mt Carmel Group (maybe less so, unless the doctor was really stellar)?  If no one has a clue, perhaps someone has an idea of how to start a search.

This evening I will be be reluctantly going to OSU Emergency Dept, because Dr no.3 said that having had multiple abscesses, I will need a CT scan. I was not really interested in having more radiation, I’ve had at least 10 CT scans thus far; but I don’t want to be admitted.  The GI & Hepetology wards were combined with the Infectious Diseases ward last year; ostensibly for reasons of space. Last week someone died on that ward of H1N1. The idea that I could die of a secondary infection, while in the Hospital, set off all my self preservation mechanisims. Will they let me have my scan, write me a ’script for some steroids and let me go until my next appointment? I doubt it, but it’s worth negotiating.  Right now, the discussion having not even started, we are stalled at no. I will not be admitted, they will surely not summarily write the Steroids. We need a way to get beyond no, we need room to maneuver.

If any one had any ideas about this tactical negotiation, please feel free to speak up. I need all the advice I can get. In the meantime, I do probably have abscesses. In the morning, before I pass stool, great quantities of blood drain from me. My temperature in on a rollercoaster, only partially mitigated by Asprin, Tylenol and Motrin, alternately. And I haven’t done anything for 3 days but sit in bed, sleep, surf the web, and force myself on occasion to eat (whose the fool here?)

If you’ve gotten through all that, thanks for your time and energy, now all I need is your advice.

M’aider!

Its been going on for 2 weeks and 2 days, and still I’ve written nothing about it.

I suppose I was hoping that it would be over with and done at any moment. But it hasn’t, and this afternoon, once again, I took to my bed with a fever of 101.3

It began at just about the moment of my 2 month inoculation anniversary. And since that day, every afternoon, and sometimes over night my temperature becomes unmoored and starts its run up and down the thermometer. This happened on or around my one month anniversary; it lasted for a few days then was normal again for a month. It seemed reasonable to me that this would be more of the same & I’d be fine in a few days. Now on day 17 I’ve lost my good attitude. B. even said, a night or two ago, that maybe 18 days should be my limit, before calling the hospital.

But I don’t want a visit to club-Med where the only ideas they’ve got are to pump me full of fluids and IV antibiotics. It usually works, I’m not going to deny that, but I think we’re up against something different here, something other than a Crohn’s flare.

You see, while I sit here with the colon spasms and the fevers, and the weakness, wishing I could go to sleep or die; the fistulae are getting smaller every day.  It’s rather remarkable,  no change for over a year in the size of these channels, and in the short time since I’ve been inoculated with N. Americanus, thy have shrunk –I would guess–about 75%.

So, are the temperatures the result of my body, now weaned of Prednisone, trying to fight off these worms?  Or is it the result of my body rushing to stitch up the fistulae?

Now 24 hours after I started this post, my temperature is 99.5 and I feel week, violated, and miserable.  I slept for 14 hours last night, and took naps all day, trying to escape the alien presence that has taken over my body, taking Aspirin, Tylenol, & Motrin in every conceivable combination, wishing only for some Percocet to make the pain go away.

If any of you have any ideas, thoughts, or suggestions on the matter;  why my body is riven between healing wounds and the draining of blood, thick ropey clots of it, and puss, and mucous; please let me know, because I can not handle much more of this and I expect that soon I will end up in a room on 11 W. Doan Hall, OSUMC.

There is a long tradition in this country, stemming from our Calvinist past, of contempt for the poor.

There is an attitude that poverty is god’s judgment against you, some sort of predetermined fine, put in place before one could even have committed the infraction. Worse still, was the suspicion that some kind of moral contaigen was involved, so that even if one’s fate was predetermined, spending too much time around the unfortunate might cause god to reconsider your fortunes.

As America expanded westward across the continent, these ideas become confounded with proto-libertarianism, further making the less fortunate an object of contempt. Now, in the 21st century we have what look to be perfectly legitimate commentators on Fox news, strenuously arguing that to give a shred to the the poor, the uninsured, the sick, the homeless, will break the back of the “middle class” and further more, encourage the poor in their folly of poverty.

What I do not understand is why the left stands there, agape at the charges being made against them, yet will not look at their detractors and call them Liars. Misinformation, obfuscation, falsification, inaccuracy. . . I have heard every polite synonym used for what is going on, but not the the one essential truth. The right is lying, and the reason they are lying is that they are really and truly afraid that anyone else’s gain is their loss. They would rather have 46 million of their fellow Americans without access to health care, then contemplate sharing. They will go so far as to make up, invent out of whole cloth, nay, lie about the consequences of universal coverage to themselves then permit such a thing to happen— Probably because of that contagion factor I mentioned above.

Now some Washington Insiders are talking about taking the “public option off the table” since it is “so disturbing to so many people.” But I ask you, if a lie is disturbing to your constituency, is it not better to refute the lie and clear the air, than to capitulate to it, allowing the liars to come back and lie another day, about something else. Remember, the Republican party has clearly stated that if this works, they will use it as an inroad to undermine the entire Obama presidency, which I think can be directly translated as “show that &%$#@ who’s boss.”

Just because our legislators and our commentators will not use the Liar word does not mean that you and I must not. You will certainly hear many strange things in the next few weeks, my own mother asked me the other day if I’d heard that Obama intended to take health care away from people over 65. Stand up, stiffen your spine and call them Liars. We can man the battlements when our elected representatives will not, and if all we have on our side are John Stewart and Stephen Colbert, at least we can watch them every night and and laugh. But together we will not loose.

Do not blink, this is war.

PS: somewhat after I posted this it occurred to me that I implied that the Republican party was racist.  I’m sorry, I did not mean to imply this.  I meant to say it outright.  If you have any questions on the subject I call to your attention the Republican Party mouth piece, Fox News.