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  • Nanworimo 2009

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  • Trust, or Lack Thereof

    My LLMD and I think I have an stomach ulcer. I’ve stopped Lyme treatment for the next month to let my stomach heal. I was on antibiotics for ten days – hope it was long enough to take out the H. Pylori, which is the cause of most ulcers.

    Isn’t it amazing how just a few short years ago, doctors were certain that ulcers were caused by stress and poor diet? Now everybody knows it’s a bacteria, not something the patient did.

    The scientists who discovered this were originally literally laughed out of medical conferences where they tried to present their findings. It took decades for the Medical Establishment to accept the change in spite of hard scientific evidence.

    By the way, the guys who figured this out won the Nobel Price this past October. The 2005 Nobel Prize in Physiology or Medicine

    My H. Pylori didn’t show up in the generic test I was given two years ago. This past February, my LLMD ran a three part test that showed I have a rare type of H. Pylori. Basically, I suffered severe stomach distress for two years because someone didn’t think to run a more effective test.

    This information leads me to two disturbing questions:

    • Which medical theories being used on me today will be considered laughable (or tragic) in a few years?
    • How many people needlessly suffer because their doctors do not know about (or are not willing to use) more sensitive lab tests?
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    Grateful

    Oh sure, I could spend an entire post telling you how my first experience with antibiotics went, how the Herxes plastered me to the couch with the most extreme fatigue I’ve ever felt, along with a scattering of sharp, needling pains all over my body and other assorted new symptoms. Or how I had to stop temporarily because my LLMD is worried about me having a stomach ulcer.

    But I’d rather just post this link about an amazing whale rescue last December, in which the 50 ton, female Humpback whale thanked her rescuers by nuzzling them, one by one, before she swam off.

    Ain’t the world full of marvels? Enjoy!

    Whale Thanks Rescuers

    But You LOOK Good…

    Here’s a couple of things for those of you who want to understand what it’s like to be chronically ill.

    First, a good description of Lyme fatigue I found on a support bulletin board. It was an answer to a guy who said he wanted to understand why his formerly vibrant wife (who now has Lyme Disease) could only sit on the couch and watch TV all day:

    “Perhaps, you can think of it this way… Remember a time when you had a very bad flu, now, add your worst hangover, then think of what it might be like with cotton in your head, place on that sore muscles after a marathon, mix in the fear of not knowing how you are going to feel from one moment to the next, or if you will ever regain your stamina again, and maybe, just maybe…you might begin to catch a glimpse of what a GOOD day feels like.”

    Second, here is a link with an excerpt from a booklet published by the Invisible Disabilities Advocate (www.MyIDA.org):

    But You “LOOK” Good! The wrong thing to say to someone with a chronic illness

    Accurate

    This is the best description I’ve seen of what it’s like to have Lyme Disease:

    Under Our Skin: The Untold Story of Lyme Disease

    Click the Enter Website button first.
    Then click and read What is Lyme Disease.

    Starting Treatment Today

    I’m finally feeling well enough to start taking my antibiotics today. Well, almost well enough. I woke with a nasty migraine at 5 AM. Meds got rid of most of it, so I decided not to abandon my plan to start treatment today.

    I spent a couple of hours last night trying to wrap my head around what meds I need to take when. This with food, this without. No dairy, but yes Acidophilus. Half an hour before or after a meal, but two hours before or after antibiotics. It feels like hard math and makes my brain hurt, but I finally got a checklist I may be able to follow.

    Without the list, I would be completely lost today.

    I took my first dose a half hour ago. I’m very fatigued, and already feeling the familiar “ten-ton weight on my shoulders” sensation that I get with heavy meds. I’m gonna have to lie down. I’ll keep you posted.

    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. 😉

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