I have a “find a doctor dilemma.”
I spoke last year about my gastro’ “firing” me.  I foundered around for a while looking for someone, at a very bad time to be doing so; as it coincided with the time that surgery became inevitable.  (There was alot of resentment about that, there still is, because no matter what she says about her reasons: doing more teaching, not being of any further help to me – - she did say mere  months before, before I mentioned helminths, that she’d be my doctor “until she died.”)

Anyway,  I finally found a Doctor I liked, who was willing to work with Helminths.  Six months after I signed up with him, however, he left Ohio State University Medical Center and joined The Mount Carmel group of hospitals.  I have been with OSUMC for 10 years, Dr Pfiel had a file on me that was more than 10cm thick.  It outlines my relationship with the biologics, all my hospitalizations, the Crohn’s disease in my lungs episode and not least, I have a deep and personal relationship with the staff on 11W. Doan Hall.
On the other hand, maybe it’s time for a clean break from this system.  Maybe a new system will shed some new light on the situation.

Ok, I am tearing up as I write this because I know it’s not just saying good by to the nurses and support staff that I know and who care for me at OSU Hospital, but for the colon that took me there so often in the first place.  As it is I may not often end up on the 11th floor with Bill and Sara and Colleen and Sofia and Phil and all these people I’ve become close to in the last decade—because I no longer have the part of my body that put me there.
God, I need therapy.  Have I mentioned that I need 4%#k!n& therapy?

Anyway, my mental health aside.  What do I do, go with this pretty nice worm amenable guy at Mount Carmel, or look again for someone new at OSU?
Marya

Presently in the AutoImmune Therapies public forum, is being discussed the price of worms. They are shockingly, prohibitively expensive. To be inoculated with both hook and whip worms is between a three thousand and four thousand dollar (USD) commitment. I responded to a querry saying so, by saying that I believe that given what Jasper Laurence did to get them in the first place, and the trouble it takes to separate and sterilize them is adequately reflected in the price.

My corespondent replied, “I personally don’t believe that the costs are reflective of the process involved,”
Agreed, but the asking price of a thing includes far more than the processes used to produce it.

I began to consider the economic of the thing several months ago, when I came across an article in the New York Times about some chicken farmers selling truly free range eggs, for eight dollars a dozen. Eight dollars a dozen, I choaked, who can afford eight dollars a dozen for eggs?

“Maybe,” B. said “that’s what they cost to produce.”

If the person wants to live in a heated house, with a television, a telephone and perhaps basic cable; and we want her to devote her energies to the maintenance of a flock large enough to have eggs worth bringing to market, she is then a defacto farmer, tied to the land. What should she make for her labors per hour? Once the flock is fed (extremely well) and housed (extremely well) veterinary bills paid, shipping costs paid, staff and specialist labor accounted for, what is she to pay herself. This kind of farming disappeared by the late twentieth century because it was clear that the answer to the above question was — nothing.

In order to charge the prices that urban and suburban residents wanted to pay for food, the farmer had to draw no salary. This works, when crops are tended by peasant farmers unable to aspire to a middle class life. But farmers began to leave for the city looking for clean lucrative factory work; leaving fewer and fewer behind to do the agricultural work, allowing farms to become factories, thus forcing more farmers off the land.

That got us here, where we are today, rife with auto-immune diseases, eating genetically modified corn in a thousand different permutations, paying next to nothing for it at the hyper-mart. The situation proved to be unsustainable. It might have lasted a couple more generations, infact, if the city folk hadn’t gotten so rich that they began to ask for something more. Something they couldn’t produce for themselves because getting rich takes time, time that might otherwise go into have one’s own chicken, or two. But what can we afford to pay the person who raises those chickens? Does she have any right to ask to be middle class too?

This is why some people get bent out of shape when they hear the Wall-Mart is selling organic vegetables. It is not because we believe the people who shop at Wall-Mart do not deserve organic food, but that we know that it simply can not be produced that cheaply. Somewhere along the lie is being told, a short cut is being taken, a chicken called “free range” is in a tiny hen house with a door that is opened from 8 to 8:23 in the morning , for the third through tenth week of the poor birds life. At that point she doesn’t know what the door is for, or why she should use it. Still, good enough to sell at Wall-Mart, good enough to sell for $3.00 a dozen, which is three times what they are getting for conventional eggs, for almost no more effort.

Anything that is made artistenally, anything that is crafted individually, like a chicken makes an egg, or a baker makes a hearth loaf, or Jasper makes a dose of Necator americanus is going to cost more than a middle class person can easily afford, if the maker wants to be middle class. Those in poverty will never be able to afford this luxury. The tricky part is that, their time being worth nothing to society, the poor may have the time to keep a chicken or bake a loaf of bread. The ironic part is that through out most of the world, the poor are the ones who have hook worm in the first place.

If I’d realized at the time that I’d done something unforgivable, I’d not have bothered to do anything at all.

As it stands, I’ve alienated people I didn’t know I had to alienate in the first place.   I strongly considered, rather than writing this, just deleting my last post to Necator Americanus: Superfriend! but that seemed intellectually dishonest, and besides, I hate to throw away good writing.  But as I have been reminded, no one wants to bother much with the sick and the poor, these things might be contagious.

My first mistake, if you discount the fact of the post itself, was asking my old friend K. to mention, on her face book page, that I needed help.  And then yes, the old adage proved itself true.  Need help and you will find out who your friends really are.  The silence was deafening.  I was suddenly mortified.  I’d directed these people to you, this page, this blog.  I’d introduced them to a forum upon which I’d discussed my colon.  Oh dear,  that was certainly a mistake.  If anything is going to be contagious, it’s going to be in your intestines. . .or poverty, which ever comes first.  Within the American medical system it’s usually the illness that comes first.  Still, I was naively prepared to have my next post, this post, be about the power of the internet and the generosity of others. Let me suck on the bitter irony of that for a moment, please.

K. and I spoke on the telephone last night. I called to tell her that of all the scores of people we knew together, only one bothered to say a word.   M. she said, is an MD and lives in Hong Kong.  N. is a lobbyist  in D.C..   B. has a PhD.  X does this Y does that, nothing succeeds like success. And I’d bared my ass to these people.  I showed them, unbidden, that I needed help.  What could be more humiliating, even if done grammatically?  I’d like to say that I’ll go away quietly now, with my tail between my legs; but it’s unlikely, given my personality, that’s going to happen.  Less likely still, however, that I’m going to get a face book page.  Update to whom?  And what, that I’m in the hospital again, that the surgeon finally got his way?  That would remove the colon, but not the faux pas.

I asked K.; when we were in college, and we all used to hang out for hours on end, what did we talk about? Because I can’t remember a single serious conversation we had.

“I don’t know.” she said, “I really don’t know.  I don’t think we talked about anything important at all.”

“Yea, I didn’t figure, but I thought maybe I was forgetting something.”  We drank beer and played guitar, there was alot of that. Drinking and singing.  Didn’t amount to much of anything at all.

On April 21st, 2010 I will be making my third Pilgrimage to the Cleveland Clinic. This time to see a surgeon there.

Doctor H, who I have mentioned before as being at least non hostile to the idea of Helminths, agreed that before he removes my lower colon, my rectum and rebuilds my anus of muscle tissue from my abdominal wall, it would not be weird to have a second opinion. On that day, the day of the second opinion, I will be three hours from the border at Niagara, where Auto Immune therapies can ship helminths to me with out breaking US law.

I will get a passport, I will go anywhere within reason, I will allow the good soul who allows me to receive the package from AIT, at their house, to completely inspect the package to prove that I am not having any narcotics, pornography or contraband of any Canadian kind shipped to their home. I simply can not have the package delivered here.

The FDA, as I have mentioned once or twice below, has ruined it for all of us in Helminthic therapy. They classified it as a drug and then immediately outlawed it. Surely, they must have had their reasons. But it is a tragedy to those for whom the therapy has worked. At my colonoscopy yesterday there were very few T. trichiura found. Only two, actually, but where those worms had attached the tissue had healed and the area was quiescent. I don’t know what happened to the other 23 larvae I swallowed, but I am convinced that I must have a full load of worms before I can allow these doctors to decide how much of my colon must go.

I know that for all of that, I am probably still going to need a colostomy. My rectum is destroyed. It is a miasma of scar tissue and fistulae. But I like to pretend that maybe, just maybe, there is a chance that six months with an ostomy to give the whole thing a rest might just allow them to clean that mess up and get me reattached. All I need is one Canadian, one resident of Niagra to help. So I am asking you, my brothers & sisters up north. You with your single payer health care, and your much lauded kindness and civility, to please help one person with Crohn’s disease get the treatment she needs before they start coming at her with knives and anesthetics. And if you can’t, please pass this plea along to someone who you think maybe can.

Sincerely, and in Humble gratitude

Your Friend Marya

They’ll be scrutinizing my colon on Monday. I can tell them already what they are likely to see. My colon has not functioned this properly for years. There is no blood, absolutely no blood from my colon, and no mucous. My stool, that age old barometer of a healthy monkey, is bordering on perfectly normal; excepting the fact that it has to pass through the eye of a needle on the way out. And I assure it is not with out sin.

Getting healthy turds through a rectal maze of strictures, scar tissue and fissures is unholy hell. I take stool softeners, drink apple cider, and eat lettuce salad with every dinner, even take out pizza. And it helps; but it does not remove the damage time and Crohn’s have already done. Last week I spent the week on a course of self prescribed antibiotics. Waste gets caught in open fistulae and causes raging infections. One is suddenly back to 100.6 degrees Fahrenheit, and miserable; but there is no flare up to blame it on, just an architectural problem. Still it means that I can’t go out,and am often sent off to my bed. Fine way for a person in remission to behave.

Yet, I feel strongly that something within me is pointing toward the lodestone of wellness. I know as I sit on the Crohn’s throne, that things are righting themselves within me and that it is inevitable that I will need a colostomy to circumvent this rectum of mine, for the fissures and fistulae to heal. Continual aggravation in a septic environment is doing them no good. If and when the doctors say that there can be no reversible colostomy for me, I will be prepared with a trip to see the surgeons at the Cleveland clinic. In the meantime, while they are in there, I’ll ask them to take a picture of my Trichuris trichiura so that I too might see some of the friends that have done me a world of good. Then leave them unmolested, as they are doing their job and quite well.

As a matter of fact I’d like to report for the record, that I experienced better health with this dose of worms far more quickly than when, in the first infusion, I received N. Americanus alone.  That’s a good thing for the Superfriends.  Captain Americanus has a side kick, The Living Whip (worm).   I’ll be sure not to miss their show, coming to a television monitor near me, Monday afternoon.

It has been mentioned that a certain member of our forum was denied the use of Remicade because they had been exposed to Human Papaloma Virus. I found this strange and disturbing. I had a irregular pap smear about 20 years ago. Believing that I had been exposed to HPV, they gave me a cone biopsy. Even though I thought of it as ridiculously minor I have always listed that biopsy on my list of previous surgeries. Never the less, absolutely no one has ever suggested I should not try Remicade, or any of the biologics because of it.

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’ve learned personally why torture doesn’t work, enough pain and you’ll confess to anything.

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

Memo: to the FDA

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.

It is the most obnoxious question ever asked of me, and it is asked all the time.

How convenient it would be if these Crohn’s disease symptoms were my own damn fault. My very parents are prime offenders. When I tell them I am having terrible spasms or pain they ask “What did you eat?” And every time I explain again that it has almost nothing to do with what I did or did not eat, so that they can forget and ask the same question again two days later..

If it is my fault, if I merely could prevent myself from eating, moon pies or buffalo burgers I’d suddenly gey better and they wouldn’t have to feel so helpless. I’m not faulting them, my parents and friends; they’re at a loss. They see me trapped in my house, or gasping for breath while my intestines heave and they want to be better, they want to rescue me. The possibility that I can just give up eating that one thing that’s killing me is just to appealing in the face of it all.

Still, it’s fucking obnoxious. I’m not doing this to myself; what kind of moron do you think I am?

There is, however, a way of approaching eating that can, in the most minute way, help. To begin, have no snacks. A person with Crohn’s disease eventually ends up with the digestive system of an invertebrate. Eating food immediately makes one have to poop. The lag time is usually no more than 15 minutes. If you are snacking all day, you will be in and out of the bathroom all day. This leads one inevitably down the road to not eating at all, until one is deranged with hunger, and the cycle begins again. “I’ll eat just this one little thing.”

As for myself, I have noticed that green leafy vegetables, just make the simple job of digestion easier. Soluble fiber, not insoluble. Popcorn and lentils are painful. As mush as I love them I try never to eat them if only to save myself some trouble when the inevitable questions are asked.

Just a few days ago I read an account of Farrah Fawcett’s life and death.

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.