This is what I mean when I insist that medicine is an art, not a science. Different ateliers (and I use that word specifically, because I do not mean philosophies or “schools of though” I truly mean “the folks your doctor is hanging around with”) can have vastly different understandings of things, put emphasis in entirely different places. If medicine were quantifiable to irreducible laws, like physics or mathematics, this variation in what is known could not be possible; but it is, because in so complex a system the facts can be quite fluid.

Speaking of fluid, I am loosing some blood, these days, probably from rectum. More specifically, probably from the stricture in my rectum. My colon & sigmoid colon, feel fine—great. The ridiculous pain in my rectum has abated, but the cort-enemas & cortifoam don’t seem to be stopping the cherry red blood.

Dr. P is making an appointment for me at the Cleveland clinic for a second surgical opinion. Maybe at that atelier they have discovered how to dissolve scar tissue. (You know what’s funny? How many people have asked me “Can’t they use lasers?” WTF? What does that mean? Lasers for what?) Before that there is a Colonoscopy scheduled. I’ll need to remind them that the last time I had one of these done they had to use the baby’s scope, to get past the stricture; so they don’t make a colostomy moot before anything further is said, that or kill me with a ruptured colon leaking sepsis into my blood.

I promise you, there is no fear more profound than the fear today, of yesterdays pain. Anything. You will confess to anything. You will do anything, you will jeopardize your self, your family, your friends. The fear will destroy your humanity. You will chew your arm off if there is the off chance that will help.

Rage. While I am actually in pain rage is the primary emotion. Maybe I need the adrenalin to get through, but I’ll take the head off of the next person who says sympathetically “Oh, I thought the worms were working.” (In actuality I’ll take the head off any one who says anything sympathetically, I swear, I’ll kill you.) But don’t tell me that my therapy is not working when I am in this kind of misery. Because it does work my intestines are refracting. Things are getting better in there so I am tapering from 40 mg. to10 mg of that bio-toxin Prednisone. Now there is no ignoring the damage done by years of this disease to my lower colon and rectum. The damage has become excruciating obvious without the mask of steroids.

In actuality I don’t really know if this post is making any sense, I am in pain. I am writing the confession the Inquisitioner wants: Yes I took the oxycodone, I took it yesterday as I felt myself sliding under the water (board) and I took it again this morning, before the pain could even walk into the room. You tell the CIA, when you next talk to them: people in pain will say & do the craziest things. I am living proof . But as I told B when that 1/6th of a pill was sliding past his ability to retrieve it, “Sure I will pay for this on Saturday, but at this rate I’ll be dead Saturday, and I’ll take my chances.”

Mea culpa.  Mea culpa maxima

From: Superfriend’s super host.

In re: Feeling just fine

I’d just like to take a moment out of my busy day to tell the FDA that I’m feeling great. I’ve been hosting these worms since October and I’m feeling better than I have in years. I know that I’ve empathized with the FDA in the past; understood that it is difficult for a large bureaucracy to function in an effective manner and asserted that no individual FDA employee was “out to get” any one in particular. But, I have also said that there is a big problem with an agency that allows glaucoma medication to be relabeled for the “disease” of thin eyelashes, and lets slaughter houses use scraps fit for dog food as meat for fast food hamburgers.

There has been some mumbling lately about the use of chemical extracts of helmenths for use in the treating of some disease. The rational here being that there are too many unknown variables with the live worm and really shouldn’t we just extract what we need. I believe, however, that they have the logic squarely backwards. In any system there will always be chaotic, unpredictable elements, but in the case of helmenths, and other flora and fauna that the human race has been living with for eons, the randomness in the systems is rather well understood by its users.

For example, Mediterranean people with Favism know that contact with the pollen and fruit of the broad bean causes a predictably terrible physiological experience, but it protects them from Sickle Cell Anemia, in a way that a laboratory created medicine may not—and most importantly we can not know what kind of side effects the unmitigated extracts will cause. Years and years of drug trials can not create the level of understand that a cultural heritage has accumulated. We know what N. Amercanus will do to a body, at all different infection levels, because we have millennia of folk documentation telling the story in detail. That is not anecdotal evidence, that is the kind of self reporting, self correcting research any epidemiologist would love to have.

Then let me add one more voice to Necator Americanus’ story. I feel great. I’ve tapered my steroids down to 15mg and plan to decrease to zero my no later than the end of February. My temperature is stable, my weight is increasing, my energy has returned to a normal human level, I am no longer bleeding or shedding mucous, and I am reabsorbing water in my large intestines, as I was meant to do. FDA do you understand the implications of this? Do you know that you have shut down yet another purveyor of good because you “officially” could not understand what he was doing? Because just as ten thousand years of eating unpasteurized cheese and drinking raw milk couldn’t be reconciled to the needs of industrial agriculture; hosting live worms can not be reconciled with the needs of industrial pharmacology.

There are broader implications here, chaos in the system that one may not even have considered. To wit: there comes a time in any empire that it begins to choke on it’s own bureaucracy, it is at this point that the people begin to suspect that the government is not working for them, but for it’s own sustenance and that of its donors. It is at that moment that the people begin to abdicate and go their own way. Some smoking marijuana or self infecting with worms to relieve illness, but others doing ridiculous things, such as rejecting childhood or influenza vaccinations, home schooling their children, joining “Tea Party” movements, and generally undermining the fabric of society. This is not the time to retrench, increase penalties, and push harder against the zeitgeist. This is the time to step back and say, are we the chaos in our system, what have we stubbornly not understood, what are we doing wrong?

Get back to me, FDA, when you’ve worked out some kind of cogent answer. If I’m home that day, instead of out enjoying life, like a well person, I’ll be glad to talk you about it.

She died of anal cancer, did you know that? Anal Cancer, I thought to myself, I can almost just imagine how miserable that might be. She could have gotten a colostomy, but as her partner Ryan O’Neal said, how could the girl in the swim suit have a colostomy bag, how could such a thing be possible? So seeing no other option, she traveled the world, trying different alternative therapies looking for a cure.

“Oh my god!” I thought, “Was she mad?” Was she some kind of weak minded faith healing nincompoop?

Then I remembered myself, and how just days before I’d admitted to Dr.M. that my main objection to colostomy all these years was vanity. And that the FDA just deported the father of the strange therapy that I was attempting instead, involving human parasites from Africa, as an alternative to having my anus cut off.

Yes indeed, on the face of it I am as deluded as the next nut job. But although I have said some harsh and sarcastic things here, about the Food & Drug Administration, (They are not to be forgiven for being manipulated by big Pharma and the medical industrial complex) I believe that each individual agent is trying to do his or her best, with the little money and the huge restrictions given them, to keep us safe. I can not imagine what the agent who found themselves in Jasper’s lab thought, realizing that Jasper himself was the growth medium for helmenths sent out all over the world, for truly sick people to infect themselves with.

If there is a precedent, I can not imagine what it would be. For a very long time insulin was extracted from horse urine, but those were special horses, sequestered horses, horses that lived isolated and privileged lives. Jasper got himself the worms so that he no longer had to live the sequestered life of a profound asthmatic, so that he could step out the door and live out among the pathogens. But here in the paranoid 21st century, we have gone so far as to try to turn pregnant women into physiological “clean rooms, ” to control what they eat, breathe, & even hear, to prevent contamination of the fetus by the “host.” How is a culture that has deteriorated to that point going to wrap its bureaucratic mind around the idea of a free range homo sapiens hosting an organism with which to infect other people.

But what if, despite the fragmented scientific evidence, and the anecdotal information, and the bizarre laboratory conditions we have presented them with, the FDA actually thinks there might be something to this therapy. What if they wanted to give it further consideration, but it flew in the face of every guideline they’d constructed for themselves and had imposed upon them in the last 40 years? Tied and gagged how could they seek to investigate a thing so. . . beguiling? Here’s a thought. In the couple of weeks before the FDA descended upon AutoImmune Therapies, the hygiene hypothesis and worm therapy had been in the major media twice. There is no doubt that people were going to begin to ask their doctors questions.

I humbly submit that from the standpoint of the patient it is less effective, at this juncture, for the doctor to pretend to know nothing, or say cryptically, “look around on the internet I’m sure you’ll find something.” than to say: “the FDA just outlawed that therapy two weeks ago, contact them and they may be able to give you some information.” The fortunate truth is that the socio-economic status of those who watch House, or listen to Radio Lab makes them likely to contact their Senator or Congressman if they don’t like what the FDA tells them. People won’t officially complain unless you give them something concrete to complain about. “My therapy is being ignored by big pharma” just doesn’t quite cut it. Yet it is entirely possible that the FDA may have troubled its own waters to give our boat a wave upon which to float. I’m going to take advantage of this ridiculous set of circumstances, even as I am no more sure of Helminthic therapy than I am of string theory. I’m going to write a few letters, make a few phone calls, and hope and expect that others will be doing the same thing right along with me. Because there are apostates in fox holes, I am one.

It all began last Sunday, when Marc, of AIT, sent the forum an e-mail telling us that Jasper had some abrupt and unscheduled business with the FDA and would be out of contact for a while. Suddenly I understood the reactionary response to the comment “We’re from the government and we’re here to help.” But if that were not dismaying enough, the very first response posted to the forum, from one of my brethren heretofore to be referred to as Pollyanna, was “this could mean that the insurance could start covering it!? right?”

Gird your loins people, this is going to get weird.

And weird it has gotten; as members and interested parties, instead of maintaining radio silence, sent along hare brained schemes for protecting ourselves from something we ought not need protection from. Making us look, once again, like a bunch of crackpots, Birthers and 911Truthers. I wanted to send Jasper a message. I wanted to tell him I understood and that I was ready to gird my loins, tighten my corset, do my part for the cause, if he was. But I wanted to keep my big mouth shut at the same time. So I chose, cryptically, to remind Jasper of a title he and I were discussing last summer for this very blog. Gardez votre sang froid, keep your cool.

As I understand it, Jasper got my message. . . He just didn’t get my drift. Later he replied that, nice saying though it was, he preferred “Fight the Power.” “And that is why”, I told him, “I sent the message in the first place.” One doesn’t engage a federal branch of the Pharmaceutical Industry with that attitude, or you will be destroyed. You will be made to leave the country abruptly, to where you will no longer be their problem and no longer be meaningful competition to big Pharma. Not that I am saying it was going to end up any differently anyway, but it might have bought him some time and kept his dignity intact. Yet I don’t know that Jasper is all that much concerned with his dignity. He is a different sort of a person. Just this evening he posted, under a post titled, of all things “Let’s all calm down.” that: “for the future, look at my past. I was made for this.” These are not the words of a man who is calm, or who thrives upon serenity. We can learn that from looking at his past.

That’s fine, the Buddha may not have risked his life in Africa scrounging about for an infection with the proper worms, then undertaken to cultivate them to help others. But impetuousness is not an easily honed knife, and it has nothing to do with all keeping calm. Futhermore, the comment “I was made for this.” is speaking from Ego, perhaps even speaking from Id, but it is not speaking from Superego. These are the words of a man pushed just past his limits, not one functioning squarely within the bounds of his comfort zone. This is a man who needs desperately to be cool, and can’t. I suspect he will read this and that I will go on the list of his bad clients, who betrayed him. He becomes emotionally involved, he can’t help it. I don’t want to alienate him. I did not want this to happen to him, he’s a good person, just a little bit clumsy about the interpersonal thing. On the other hand this time he is facing the worse adversary of his life.

What are we going to do about the FDA? The Bush administration turned it into a broken machine that eats its friends and suckles its natural enemies. It has become so polluted from drawing off the toxins of the industries it is supposed to be regulating, that it sees danger everywhere except in the board room and the corporate lab. The plan was, through underfunding and mismanagement, to make it a worthless shell of an organization; then point to its uselessness as the reason for taring it apart. And surely if the Ayn Rand wing of the Republican party had won another term, that is what would have eventually been done. Rather than that we are left with a flailing monster that wants to kill, I mean regulate, something but is woefully mistaken about what is fair game.

To wit, we may now buy glaucoma medication, although we have perfect eyesight, for the medical condition of spindly eyelashes. Because a side effect of glaucoma eye drops was eyelash thickening, a new disease was invented and promptly cured with the approval of the FDA. On the other hand we soon will not be able to eat Raw Oysters in the summer. A hand full of people get sick and die from them every year, a very few, five or ten. Concurrently, because cattle are fed corn rather than grass, a form of e-coli proliferates in their gut which kills hundreds of people every year. The oyster men, however, have a less influential lobby than the beef people and cattle fed on corn will never ever ever be made illegal or deemed a danger of any kind. These two are only the most egregious examples of what FDA regulation has come to mean, that I could pull off the top of my head. This manner of regulation has been going on for nearly a decade. Now they have decided that since Helmenth therapy actually works, it must be stopped.

If AIT is not a joke, it must be a threat. So Jasper and family flee in the night like the Israelites, while Pharaoh turns his back for a moment and pretends not to notice the subterfuge. Go, like the scores of offshore corporations before you, to a place you will not be a problem to Big Pharma or an asset of its many adversaries. Go perhaps, even somewhere you can scuba dive in January, but go and take you oysters and your cheese ripened for less than ninety days and your bad attitude with you.

We the beneficiaries of all these gifts of nature, Worms, bivalves, cheese, men with, perhaps, Asbergers Syndrom, will go though our mechinations to get what we need. It will will be more difficult and cost us more, but that is the point. At some point it becomes easier just to take the Surgery,the Humira, the Velveta, the man with out the guts and the idea,and forget an other option ever even existed. At least the FDA would have it that way. Deregulation is not and has never been about regulating ourselves. It is about having corporate entities regulate us, to their benefit and for their profit. The problem here is that Jasper is too much of a mensch, not looking to make a fortune off of his discovery, if he had a team of accountants, patent lawyers and an IPO, he’d probably be just fine. If he had a buy-out offer from Ross Labs, he most certainly would.

We agreed, Dr M. and I, that having given N. Americanus its six months, until April, if I was not truly better in the spring I’d seriously consider surgery. I have been at this crossroads before, seeing the departure point of colostomy and saying, with relief, “Ah yes, there it is.” But then the certainty fades, perverse optimism takes over, and the idea is dismissed. But this morning, confronted by the forth day in a row of pain and swelling, boredom and discomfort, I am forced to admit that the past two years, infact, have been hell.

I feel like the frog in the pot.

As the water gets warmer I insist I am fine, every thing is just fine. It’s nothing more than a sauna, I can handle it. But a good attitude and a stiff upper lip won’t help you when you are boiling and the waters of ‘da Nile, are getting hot. It has become about time that I admit to myself that I can’t handle it. The only reason that I’m still standing here in this pot is because I’m stuck, and never mind the smile on my face.

Furthermore, it is one thing to insist upon not regretting the loss of year or what could not be helped; it is an other thing entirely to loose years to stubborn denial. Yes, I hope N. Americanus works, but come April I will do my best to be emotionally ready for surgery. I will endeavor to practice, along with optimism, acceptance and the relinquishing of self delusion.

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.

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.

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.

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.