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  • Nanworimo 2009

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  • IM (Bicillin) Tomorrow

    It’s been a tough fall. As well as a rocky spring and summer. Since I last checked-in here about my illness (was it really October 2006?) my treatment has taken many twists and turns. Including oral antibiotics for Lyme and Bartinella, IV antibiotics for Lyme and Bartinella, more orals for Babeosis, and most recently, I have gone off all antibiotics for a couple of months in order to let my liver take a rest.

    Some symptoms have definitely improved, especially since I got serious about going off of gluten last winter. I rebelled against the tests that showed I have a genetically-based inability to digest gluten. Those test further showed that my body was having a severe immune response to gluten and casein, from cows milk. I went off gluten and casein (and the other foods I’ve grown sensitive to, at least a dozen) and felt better. I hated changing my diet, so insisted it was all a coincidence and I went back to eating gluten. Surprise, surprise, I felt way worse.

    Last January, I finally screamed, “Uncle!” and really went off gluten, dairy, and the other foods I tested sensitive for. I lost 30 pounds without trying. Some swollen body parts have almost normalized. Blood pressure was normal for a while off all meds this summer. When I do accidentally eat gluten (like in Chinese food), my blood pressure goes up and I feel noticeably worse. Plus I start to swell like Violet Beauregarde in Charlie and the Chocolate Factory. In spite of my love for all things wheat (you can still hear me wandering around the house, breathing the words lustfully, “Cake… I just really want some… cake.” Or bagels. Or sausage. Or pizza. I know this is giving away certain aspects about my personality of which I am not proud, but this is the way it is.

    Other highlights from the year: Firing my primary care physician who promised for a year and a half to help me when it was time to try IV drugs to combat Lyme. She bailed at the last minute, which required me to drive to Winona to get a simple PICC line inserted in my arm. Actually, my sister, Margaret, had to drive me. I was not allowed to drive for a few days after the PICC line was inserted.

    I could write scads about the PICC line experience, the air bubble (embolism) I got in my shoulder exactly a week after the trip to Winona, the chilling fear about having a nurse rip the embolized PICC out (turns out it’s painless), the indescribable pain from having that same lovely nurse insert an IV line in the back of my hand (THE most painful part of my body) so I wouldn’t miss a day of treatment while waiting for a new PICC line, the agony of having to use that line twice a day for three days, my hysterical tears when I thought I’d have to get another ride to Winona to get the new PICC line, the unbelievable relief at the kindness of my home health care nurse who called the hospital next door to where I live and talked them into letting me get the PICC line there.

    Even better, my nurse got me an appointment at 7:30 Monday morning, which meant that the painful, evil IV line could come out immediately. All I had to do was wheel my loaner power wheelchair across the skyway that connects my building to the hospital. It was a piece of cake, except that they sutured the pick line down to my arm… no one knows why some surgeons think that’s a good idea. (There is a much more humane way to secure the line to the skin – a very strong adhesive thinggie called a Stat Loc). Two weeks later, the stitches ripped out of my arm when the tube caught on something while I was shopping. I bled all over. My nurse had to cut the shredded sutures off, and tape up the torn skin on my arm. We went back to the beautiful Stat Loc. Lesson: Whenever you get a PICC line, do NOT let the surgeon sew it to your person.

    Several months and two different IV antibiotics later, my Lyme doc suspected another coinfection – Babeosis. I tested positive. No wonder the IV drugs weren’t working the way we thought they should! Out with the PICC line. In with three months of antimalarial treatment (Babs is a close relative to Malaria). Finished that treatment a month and a half ago. At the moment, I’m six weeks into a two month liver rest, mentioned earlier.

    However (there always seems to be an, “however”), now that I’m off the antibiotics, my Lyme symptoms have worsened significantly. Meaning I can’t function at all well. Pain, cognitive skills, lack of energy, you name it — every thing is worse. Heating up a can of soup for dinner is often out of the questions because I “wasted” all my energy on showering and getting dressed earlier in the day.

    I’m going to start up antibiotic treatment against the Lyme again. Tomorrow, in fact. Jay is going to learn (from my new, completely cooperative primary care practitioner’s office) to give me IM (deep muscle) injections of Bicillin. I’m trying not to be freaked out by what I’ve read about the two inch needle, the pain in the muscles that can go on for days, the lumps that form in the glutes at the injection site, the horrific herxing that can happen when the drug is working.

    “Don’t worry,” my Lyme doc told me, cheerfully. “Just take it slow. Make sure Jay takes a full five minutes to give you the injection and it won’t hurt at all!”

    WHAT! A two inch needle stuck into my butt for FIVE FULL MINUTES? No problem. Right. I can do this. NO I CAN’T! What am I thinking! This is a huge mistake. HUGE!

    Okay. Getting a grip. I have read that many, many people find this treatment to be very effective. And I only have to do it once per week.

    If you don’t hear from me, it’s because I’ve passed out, and have refused to wake up until the IM treatments are over.

    I’ll keep you posted. Or not.

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