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  • Nanworimo 2009

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  • Long Post – Catching Up!

    It’s been a while since I posted – sorry for those of you who like to hear what’s going on more often.

    Since I last posted, I had a few good days where I spent all my energy on doing chores and fun stuff, like setting up my studio for silk painting, going to a wool festival and spinning for two days, and getting a new sewing machine and starting to make some summer clothes for Jay. Very fun stuff for me.

    But most of the past six weeks I’ve been dealing with pain, fatigue, memory loss, and cognitive dysfunction (a fancy way of saying that I can’t read, write, or take in new information well). And did I mention pain? I took Levaquin for a month for Bartinella, which made the pain and fatigue worse than usual. There were several days when I had to take pain killers, which I don’t like to do.

    And I switched to a new Lyme Literate Medical Doctor (LLMD). My doc in San Francisco, while very good, had to switch an appointment date. I was lucky I hadn’t already bought a plane ticket. Also, it was very difficult to get questions answered or even to get copies of my records from that office. They are understaffed, I think.

    So last week Jay and I drove to Missouri to see a very well respected LLMD, who I liked very much. I was going to drive the ten hours by myself, but thank goodness Jay’s schedule loosened up and allowed him to come. I caught a terrible cold and sore throat the day before we left. If it had been me driving alone, I might have needed three days to get there. But we managed to have a fun, beautiful drive there and back.

    The new doc took a very complete history (made easier from the thirty pages of forms I filled out in advance), and did a physical exam. I failed an eye test, which confirms neurological impairment from the borelliosis. His treatment is completely patient-driven. He gave us a huge stack of handouts with instructions and information to help me take control of treating my neuroborelliosis. I’m glad I have so much written material because it’s hard to take in new information. I have to read instructions over and over.

    Better still, he has a staff of nine, which means I can get fast answers to any question that comes up. And I got a copy of my records before we left the office. They are very efficient, and set up to help sick people who don’t have energy to hound their doctors for answers or paperwork.

    The upshot is that I’m finally treating the H. Pylori with a group of drugs put together for that purpose (called a Prevpack). I’m starting a detox protocol and an anti-yeast protocol. Next week I’ll begin a new treatment for the Bartonella, and also look at starting an anti-pain diet.

    This is a full time job.

    So finally, even though I still have a cold, I’m in a pretty good place. The weather is beautiful, spring has sprung, and when I’m well enough, I have plenty of creative and useful things to do that help me feel like I’m contributing.

    Keep in touch – I love to hear from you all!

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