Thursday, February 3, 2011

Breaking Up is Hard to Do

Yesterday I had my first check-up with my GI doc since inoculating (is that the right word?) myself with 1,250 whipworm ova.  To say that he is not supportive of this treatment would be, well, putting it mildly.  When I first discussed it with him last fall, he kept coming back to the same line: "But it's a PARASITE!  You'll have a PARASITE!"  So I knew going in to this appointment that this was going to be a tough conversation.

Part of me thought that even though he can't really get behind this, he should at least be intrigued by the possibilities, and since I had already done the deed, he'd be interested to see what happens.  But he really wasn't.  His immediate reaction was to ask about all my meds and current symptoms, becoming concerned when I told him I've had an uptick in my symptoms and actually increased my prednisone.  His thought is that because I am so immuno-compromised through my meds, the introduction of the parasite is going to render me completely unable to fend off even the most minor of infections. (To which I say, how come I haven't had so much as a sniffle while John has been fending off one lousy cold after another this winter? Why aren't all the scrapes and scratches I keep getting from trying to keep Scooby the cat entertained turning into raging, pus-y infections?)

Anyway, I told him that first and foremost, I wanted him to know that if he is uncomfortable continuing as my doctor, that's fine, and he should just tell me and I'll move on.  He said no, he's not going to toss me out, but now that I've "gone and done this to myself," his main job is to protect me and look out for potential problems.  Meanwhile I'm thinking, "What about the potential remission?  What about the potential upside?"  But he just doesn't see it.

Through the course of conversation, I realized that even if I have a miraculous recovery, he will not believe it's due to the parasites.  "It's a totally uncontrolled experiment," he says. "Maybe you would have just gotten better on your own anyway."  Now, I ask you, my friends, how likely is it that I would have a spontaneous remission on the exact same medical regimen I have been on for more than a year?  I just felt like this is crazy talk.  I don't think you have to be a "man of science" to see that just doesn't make any sense.

But I get where he's coming from.  This is a guy with a background in clinical research.  He has a lot of respect for that process, and told me that even when new drugs go through this incredibly rigorous process of clinical trials and FDA approval, they could still turn out to be dangerous.  (Hmmm....like, say, Remicade?)  He says that he's not giving this, or any other alternative treatment, a knee jerk negative reaction; he just holds everything--drugs, acupuncture, probiotics, dietary changes, etc.--to the same standard of proof that it works and is safe.  He also just can't understand why us "lay people" (I think he means "patients," you know, the people who deal with this crap every single day) are so drawn to "natural" treatments when they can be more harmful than anything put forward by Western medicine.


That was the comment that pushed my buttons the most.  I just burst and said, "Look.  It's not that I don't respect Western medicine.  I've had this disease since 1997 and in that time have tried every single medication my doctors have suggested.  But in the last two years, my disease has become less manageable while my options have diminished.  I have sat with you in this very exam room every three months begging for ideas of what to try next, and you have nothing to offer.  I even advocated for a higher dose of Remicade at more frequent intervals, which you originally balked at.  So don't make it sound like I don't want to give what you're peddling a chance.  Now I'm at the top end of the dosage for this risky medication that isn't working anymore and you can't understand that I'm looking elsewhere. 

"And another thing: don't tell me that just because it has FDA approval and is administered in a nice shiny clinic by well-trained nurses that Remicade is not just as much a roll of the dice as infecting myself with a parasite.  In my case, Remicade is a roll of the dice that we know isn't working anymore.  Jury's still out on the parasites."

OK, so, my rant wasn't anywhere near that articulate, and there was a little bit of sniveling in there as I tried to get my emotions under control, but I think he was pretty clear on where I stood.

So where do we go from here?  Well, as I was leaving, I didn't say that I was LEAVING, but I am seriously thinking about pulling up stakes and moving on.  In the meantime, he is consulting colleagues with experience in infectious diseases to see what other systemic dangers I am exposing myself to.  I offered (twice) to connect him with the web resources I have been using to gather my info about this treatment, just so he can see where I am coming from, but he's not interested in my internet hoo-ha (my words, not his.) 

Problem about moving on is it's not easy to find someone who is a good fit.  I want a good GI who is up to date on all the Western medicine stuff, and who will work with me as I go through this other treatment and whatever else might come down the pike.  They don't have to be all for it, but it would be nice if they were at least a little bit curious and hopeful about the potential outcome rather than focusing solely on what can go wrong.

Through my work with CCFA, I'm lucky to have met a lot of really great local GI's and I've talked "offline" to a handful of them about this treatment, if only in very hypothetical terms.  I did find one who seemed very intrigued, but unfortunately, his practice is about 75 miles from my home, so that doesn't seem very practical.  Because this treatment doesn't have the blessing of the medical establishment, it's hard to know what a doc might really think about it until you get behind closed doors with them.  One guy I know, a fellow "helminther," suggested that those who find a "worm-friendly" GI mark their doorways with an X or something so the rest of us will know who's OK.  Kind of an "underground railroad" for helminthic therapy.

Since it's not really practical to go looking around doctors' doorways for X's either, I will probably start making some appointments to interview prospective docs in the next few weeks.  And though I really want to find a good GI, I will probably expand my search to include a few naturopaths or other practitioners who might be more open to looking at the whole picture.  (My mother, the RN, is probably spinning in her grave at the very idea.)  We also have a center for integrative medicine here in town--maybe I'll give them a call and make an appointment.

But I do know for sure that life is too short for me to spend any more time with someone who's not behind me and my quest to feel better.  Breaking up may be hard to do, but it's not as hard as beating your head against the wall.

One more note just for my friends and family: So many of you are so super-supportive, it gives me the strength to know I deserve better from my medical team, that is, the people who are actually getting paid to care about how I feel.  But once in a while, you will use words like "inspirational" and "brave" to describe my fight, which makes me uncomfortable.  To just let you know how inaccurate that description feels, this encounter with my doctor left me in tears not once, not twice, but three times.  Once, in my car driving away from the office.  Twice, recounting the highlights of the appointment to my dad.  And thrice (Conan O'Brien would be so proud), explaining to John why I'm so frustrated.  What would be brave, to me, would be to get over it and move on.  To grab hold of this opportunity I'm giving myself to feel better, no if's and's or but's, and don't let anyone get in my way.  But that's not what's happening.  Until it does, I guess I'll just keep on keepin' on.

6 comments:

  1. A few comments:
    1) What is your vitamin D blood levels? Are they above 50ng/ml
    2) Print out a few of the most respectable articles from this link:
    http://goo.gl/CFsY

    And bring them to him. These are not hearsay "hoo-ha" articles - this is legitimate scientific research.

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  2. Hi Nancy. I second what 'helminthic therapy' said. All of us on this therapy have inevitably had this emotional frustrating conversation with our GI or GP. My GI was just as incredulous, he claimed that he had never heard about it, then I brought him articles and he just brushed them off by saying 'yes this is all very interesting, maybe someday this might produce some new therapies.' At the same time, it might not necessarily be a 100% terrible thing to have a GI that is skeptical. As long as he treats you, at least he is willing to monitor you and learn more about potential problems. Maybe if you provide him with some literature, as noted above, it will seem less 'hoo-ha' to him.

    Although, after I ditched my GI for a worm-friendly one, I have to say it is really satisfying to not feel like a crazy person in her office.

    I disagree with your point about bravery. Honestly, it takes a ton of courage to go face to face with a medical expert like you did.

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  3. Can I be super-supportive and think you're great without burdening you with "inspirational?" I'll keep courageous for sharing all of this with the world, and I have to mention witty, a great cook, and great taste in friends.

    Miss you!

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  4. Colon Comrades: I totally understand what you're saying about how it may not be such a bad idea to have a skeptic on my team. This is why I didn't just cut bait months ago when I first broached the topic. But turns out, when the rubber hit the road, it was really, really demoralizing dealing with his disdain. We'll see, though; I still think he needs some time to digest all of this.

    HT: Thanks so much for YOUR comment too. I don't know what my vit D. levels are, but I do know when I was last tested by my GP, she was "happy" with the numbers. I will look into that further. Also, I think I am going to print some of those articles out and send them to my GI with a friendly little note about how he might want to take a look. He may think it's "hoo-ha," but how can Dr. "I-hold-everything-to-the-same-standard" not at least take a look before he condemns this?

    Sam: I love you, Bina! :)

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  5. Yeah, there's legitimate scientific scepticism, and then there's total lack of support/contempt/disdain for what you're trying to do. My former General Practitioner worked at a place where there were MD's mixed in with alternative therapy docs- and the MD's were all on board with referring you to other folks or trying anything that worked basically. I could look up their info- they are right off S. colo Blvd. Not too far. :)

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  6. call up the doctor please and let us know what those numbers were that your doctor was "happy" with. I don't trust him and if they are under 50ng/ml I would *NOT* be happy.

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