Necator Americanus: Superfriend!

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

6/6/09

Let us hope that this is the beginning of the end of these hospital trips. A commencement ceremony of sorts. The worms are bought and paid for; shipping awaits my word

No one here seems to have noticed that I’ve accepted their 40mg prednesone with good cheer.

No one knows that my only concern is how to have the prescription refilled when the second set of larvae arrive I’ll have steroids enough for that too.

It’s Saturday

I’ve been sitting here in silence since Wednesday. I did not call for help because I did not know what to say.

“Rescue me from my life” seemed ridiculous. “Tell me something different” seemed absurd

6/17/09

~8:00 AM. Doorbell rings.

Fed-Ex

Worms have arrived.

Gave directions and package to B. while I hid in bed. “Figure it out.” I said.

~9:00. Band-aid with clear liquid, 2 or 3 drops, on arm

9:30. Itchy

Wow, I guess there was more than just water in that pipette.

11:20, still a little bit itchy, still hiding in bed. Can I go back to bed once more & sleep through the stress?

I changed my mind three or four times about whether I was going to tell him I’d been inoculated
His skill as a clinician eventually forced my hand.

I didn’t say a word, I swear I only thought of speaking; and each time he stopped in mid sentence and said “Go ahead.  What were you going to say?”
By the third time I began to feel ridiculous.
“My god, you’re observant.”  I said, and then I told the truth.

He and I had discussed this before, more than once in fact, but most recently in the hospital in May.  Having, by that point seen gastroenterologists blanch at the thought, I was unprepared for his reasonable response.
“Go ahead and give it a try,” he said, “we’ll see what happens.”
At the time I cynically attributed his reaction to his training as a surgeon.  As far as he was concerned, one medical therapy was as good as another.  Throw what ever you want at the problem, when it’s time to get down to business we’ll talk surgery.

But Doctor H. is a reluctant surgeon.  He and I have seen each other every six months for the past three years, and each time, as he inspected my fistulae, he has said, “Not yet. No surgery yet.”  Even yesterday afternoon, when he said that at this point “we may have to consider removing your rectum,” he said, “Of course, we can’t hold you down and make you have surgery.”

So I told him the story of the worms; after he said that it looked unlikely that the fistulae would heal at this point, and I asked if the worms calm the Crohn’s enough that my colon could be operated on, could the fistulae be closed, instead.
“Perhaps” he answered, “We just don’t know, we have no way of knowing.”
Which is really an unbelievable response.  A doctor, a surgeon, admitting that he does not know but is willing to wait and see.

7/24/09

104.5̊F.
Almost a month to the day from inoculation.  And things were going so well.  Weren’t they.

That was last night, today I slept all day, gratefully, but as the sun sets my temperature again creeps up and I am again 99.9.  I have taken 2 aspirin, 2 Tylenol, and 1/3 of a 10 mg oxycodone.  That for nothing more than to alleviate the misery.

“How long can you take this?”  B. said.  I don’t know, but I am sure I will know when it is time to go to the hospital.
“I hope you won’t have to kill the worms.”
“I won’t.” I said, standing atop the precipice.

So this is how we meet.  There is much to tell you about how I got to this point; what happened before I got this blog.  But for now I am reaching out from this place, alone in my bed, shivering as my body temperature ratchets up trying to dislodge a pathogen, probably N. Americanus, that I am hell bent on keeping.

7/17/09