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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!

    CDC Positive Western Blot

    I came home this past Wednesday from my second trip to San Francisco to see my LLMD (Lyme Literate Medical Doctor). She’s the one who gave me a clinical diagnosis for Lyme Disease four weeks ago.

    During this visit I got my blood tests results back and I am VERY positive for Lyme Disease, even based on the ridiculously narrow CDC guidelines (for both past and present infection). You don’t need a positive antibody test to be diagnosed with Lyme (because Lyme is a clinical diagnosis based on symptoms and history, not lab results), but I feel vindicated to have it show up in labs.

    I’m surprised by the fact that I’m still making the antibody after being sick for so long – it shows that my immune system is still trying to fend off the bug. I’m surprised because it’s more common for the immune system to just shut down so that no antibody is present (which is one of the reasons there are so many false negative Lyme Disease lab results).

    I also tested positive for Bartonella (a common co-infection found in people who have Lyme). My LLMD suspects I have other co-infections as well, including Babiosis and Erlichiosis. In addition, she found two unrelated infections: H. Pylori (the bacteria that is related to ulcers), and shingles!

    Next week I’ll start taking a combination of antibiotics and Prilosec to kill off the H. Pylori. Then I’ll continue with the antibiotics, which will hopefully knock out the Bartinella and other co-infections, as well as the Lyme bacteria.

    The next confirmation of Lyme infection will be when I respond to the antibiotics, either by feeling better, or by experiencing a Jarisch-Herxheimer (or “Herx”) reaction. A Herx happens when the bacteria dies-off and releases poisons into the body, temporarily making symptoms worse. Oh joy. I may have a reaction either way immediately, or it could be months. I’ll keep you posted.

    In the meantime, I have a TER-rible cold, and I’m tracking my Lyme symptoms (there are 47 on my list), and reading, spinning, knitting, and writing when I have the energy.

    I’ll try to post an update once per week, in case you want to check up on me. 😉

    It’s Lyme.

    Here is the letter I sent out to my family earlier this week:

    ———-

    My dear family,As you probably already know, I went to San Francisco a week and a half ago to see a doctor that specializes in Lyme Disease (known more specifically as Lyme Borelliosis).

    First, I want to send out a big thank you to Sarah and Gillian who were so kind to me while I was there. I had the flu the entire four days (at least I stopped barfing the day before I left). When I was too sick to visit them on Friday or Saturday, they drove all the way downtown to deliver supplies and a fabulous Chinese chicken soup, not to mention TLC and a pink bear I am calling Percy. They also had me over to their very cute home the next day to watch the Superbowl with them, which was a blast in spite of my nausea. You both made the trip as lovely as it could be – thank you.

    Second, after a complete physical and history, my LLMD (Lyme-literate Medical Doctor) diagnosed me with Lyme Borelliosis and at least one co-infection — Bartonella (co-infections are other tick born illnesses that very common with Lyme). She also started treating a Thyroid disorder (probably caused by the Lyme), and is checking me out for a bunch of other issues and co-infections. I swear to God the lab took a pint of blood out of me (14 HUGE vials), although I at least got a good look at Alcatraz out the lab window (which was beautiful, and was the closest I got to sight-seeing while I was there.)

    It looks like I have what is called Chronic Lyme or Neuro-Borelliosis (the same thing Amy Tan has). This means that nearly all my body’s systems have been infected and impaired, including my immune system and my brain. My LLMD will give me a final opinion when I see her again at the end of February to review all the test results and to start treatment.

    The good news is that I have, finally, a real diagnosis of the disease that has disabled me these past several years. The other good news is that it can be treated with antibiotics. The bad news is that the antibiotics will probably make me sicker at first because as the bacteria “die-off”, they create poisons that can make all my symptoms worse. The other bad news is that my course of treatment could last for years. You can’t believe how complex it is to treat these darned bacteria (called spirochetes)…. they hide and change forms and seem designed to resist being killed off. Some people feel worse for up to a year before they see improvement. Or some symptoms could improve immediately while others get worse. I could even get new symptoms – oh joy.

    You may be wondering about the risk of using antibiotics for such a long time, especially when everyone is worried about bacteria becoming antibiotic-resistant. This bothered me when I first started researching Lyme. What I’ve found over the past two months is that all the best medical experts say that yes, there are risks, but, unfortunately, the only way to kill off Borelliosis is long-term exposure to antibiotics and that the benefits far outweigh the risks. I have done some research on complementary treatment modalities for Lyme, and everything I’ve read and everyone I’ve talked to agrees that these modalities can support a patient through treatment, but that nothing can be substituted for antibiotics to kill the Lyme Spirochete.

    So. The bottom line is that it’s going to be a long haul, and it’s likely that I will eventually improve. My understanding is that the longer you have had the infection, the longer it will take to see an improvement. Dr. Green thinks that I have been infected for at least ten years (my carpal tunnel was probably caused by the Lyme Borelliosis Spirochete), and that it is very possible that I have been infected since childhood (remember all the ticks in Bloomington? I do… yech.).

    Of course, there’s a lot more sordid detail involved, but this gives you the basics of what’s going on with me.

    Thanks to all of you for your ongoing support. Love and kisses to everyone. And oh yes, happy Valentines Day!

    Love,

    Elizabeth

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