Necator Americanus: Superfriend!

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.

I noticed on Yahoo News today that the White house is considering eliminating the “Public Option” from the health care reform.

I can not adequately describe to you how I felt as a surge of anger washed over me.  For the past 30 years Insurance companies have grown slick and fat upon the misery of the American people.  Just yesterday I heard about a woman whose insurance company capped cancer coverage at $100, 000.  She still sick, but they’re done with her.
DONE WITH HER!!!!

Fox news is ramming the fear of Death Panels down the throats of the uninformed, who are then showing up apoplectic to “Town Hall Meetings”  shouting down the very legislators who are trying, for once to do the right thing.  And these poor slobs never for a moment realize that they themselves are $100,000 from the only Death Panel they’ll ever really see, the one that says too bad when the next chemo bill comes.

I sent an e-mail to the president first thing this morning (8/17/09).  Tomorrow I will call my Senator and my congress woman.  They will not do this to me.  The corporations will not win again, while I sit here and suffer trying to decide if I can afford the whole Asacol prescription this month or only half because the price of gasoline has gone up again.  The CEOs of Nationwide & Travelers & Medical Mutual & Merc & DuPont & Ross &c. &c. &c. do not ever, ever, ever have to worry about that.  When did I become a second class citizen, why should I be?

So please, call your representative tomorrow and insist that we do not capitulate to corporate greed merely because they have been, as they always have been, so good at manipulating public opinion over these past few weeks.

I went into the metal smithing studio last night for one reason really, and it wasn’t to work.  I’ve had enough on my mind these days to crowd out the making of art.  I went to meet B.X. whose wife has Crohn’s disease.

As it turns some of the metal workers go out with the stone cutters on Wednesday night for an late cocktail, that’s where the Metals studio Mgr K, met B.X. .   She’d told him about me, and about the worms (because we are one in the same now, I suppose, ) and although he was astonished he wanted to meet me.

As much as I preach that we must continually be on our best behavior, and not act like the religiously converted, it was difficult for me to meet a person who could so clearly be helped by this therapy and not become rather . . . emphatic.   Having done my best to tell him that I could be feeling well for any number of reasons, and not the $2500 one,  I never the less stressed that I was, for the first time in years, feeling well.

Then I went home, and passed such a painful bowel movement that I threw up.  Then I did it again.  And should I not have been paying close enough attention, I had chills and night sweats twice during the night followed by yet another harrowing poop this morning.

Why this should have been so I can not say.  But I will say that I am guilty of having feasted on Cole-Slaw at a cook out earlier in the week.  And amidst all the troubles last night there was almost no blood or mucous at all.  But why now, so many weeks after inoculation did I have these problems?  Is it because I did not knock on wood (hard to to in metals and stone studios respectively)  is it because these things are inevitable in the first six months, as one’s immune system is becoming inured to the presence of N. Americanus?  Is it because I stressed myself, going out so late in the evening, when I am usually the sort who

A.  Avoids going out in public after dinner lest she have a colon melt down.

or

B. Takes care of herself by relaxing and not running around the city after meals.

Choose the answer based upon your level of cynicism.

I am tired of pain.
Fundamentally and profoundly exhausted of half hourly trips to the bathroom that feel as though I am passing an anaconda through the eye of a needle. That, I suppose, is the essence of suffering; growing tired of the inevitable.

I’ve been surviving on a combination of Aspirin & Extra Strength Tylenol; one of each, every six hours.  But yesterday, if I was going to make it to a doctors appointment I was going to need stronger measures.  A quarter of an oxycodone, approximately 2.5mg, (give or take the crumbs on the bottom of the pill cutter) made things right, for a while.  Several hours later I was passing thick clots of blood, in penance.

I have a stricture some 35cm in.  Near where my transverse and descending colon meet.  Inelastic scar tissue that prevents the easy passage of stool.  Backed up in my transverse colon, the pressure and the pain builds and I feel as though I’ve been sucker punched in the gut.  I suspect that the only relief will be to have that bit removed. This means a colostomy until it heals, if it heals.

That is the problem with Crohn’s disease, the persistence of wounds in the digestive system.  That is what these worms are intended to correct.  The theory is that they suppress the immune system so that wounds can heal and further insults to the tissue do not occur.   Never the less, there was some suggestion that surgical anesthesia itself was toxic to intestinal worms.

M.. of Autoimmune Therapies, posted to our forum yesterday that the only drugs known absolutely to kill the worms, (aside from Albendazole, of course, which is meant to kill them,) are “Inhaled anesthetics that belong to the class VOCs, Volatile Organic Compounds.”  Which means that getting a filling may be more problematic than having your appendix out.
Still, we wonder and we worry, but worrying is a choice.

Dear D.:

I’ve gained a few pounds myself lately.  What can I say, even though I know I am not well at 110 pounds, my clothes fit better!  As of now I am 115 & there aren’t a lot of places to hide 5 pounds on a 5′2″ body.

When reading the daily postings, did you notice one of our group’s question about re-infection and immune response?  How the reaction to the worms tapers off although it should reasonably be getting more virulent?  It was a very good question, although I doubt we’ll be getting any where near an answer to to it soon.  We still don’t know why this works, let alone the subtleties of particular aspects.

Never the less, I have confidence in the treatment for myself.  Although I have been tapering my Prednisone, I am feeling a little better overall every day.  I am loosing almost no blood.  Just a schmear when my colon is spasming but empty.  But that too is happening with less frequency and I have been able to reduce the number of bentyl I am taking.  I think that I mentioned that the other day B. and I took a short walk, to the deli down the street, after dinner. Of course I had to go to the bathroom as soon as I got home, but I did not have an accident on the trip!!!!!  Maybe I will be able to keep my rectum,  it’s a thought.

Good luck on your MRI.  I have had a few of them in my time, as I am sure you have too.  The benefit is that they don’t involve radiation.  I have had enough of that to be sure, & got to the point during my last hospitalization that I refused a CT scan.  Yours will be a cranial MRI?  I would love to see pictures of my scull and brain.  I might even ask for copies.  Does that sound ridiculous?

What is the verdict on the contrast?  Will it interfere w/ hookworm or not?  There seems to be no consensus.  Has Marc published that list of known toxins to the worms?  I remember his saying he would work on it, but do not remember hearing anything since.  This would be important information to be in possession of, if something like a systematic list could be created.  Right now, as with much about this therapy, the banned substances list is almost entirely anecdotal.

Relatedly, what have you decided to do for anesthetic at the Dentist?  I am given to understand that NO2 is truly toxic to N. Americanus.  On the other hand, I am suspicious of that ice thing people are talking about.  Probably for the same reason others are suspicious of the worm therapy.  It seems like people with a vested interest are speaking out about it on the forum, just as Jasper, the owner of AIT was interjecting on other forums.  Because they can never be perceived as objective, those so closely tied to a therapy should, I believe, maintain a dignified distance and let others speak in their place.  Of course this is the America of the the Infomercial and Reality TV, and I rather doubt anyone understands the meaning of the concept “dignified distance” any more.

Finally, D. with regard to your other upcoming test; I once had a nerve conductivity test, after a particularly long time on Flagyl,  It was truly weird and freaky; legs jerking like marionettes for no discernible reason. Flagylating, so to speak.  It was amusing.

Sincerely,
Marya