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  • Nanworimo 2009

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  • August Blues

    I’ve been waiting for things to take a wonderful turn for the better so I can report something lovely. Hasn’t happened, so here’s the boring, difficult truth.

    The June uterectomy/ooferectomy surgery was a success (seems I had debilitating endometriosis), and I still have one healthy ovary intact. Also survived a July, fully of birthdays and anniversaries with my soon-to-be-ex-spouse (we had a good time together).

    But now I am slogging through August trying to continue to recover from surgery while adjusting to new Lyme meds, restarting physical therapy and non-aerobic walking while finishing legal paperwork for the divorce and taxes.

    It is all hard, all painful, and from day-to-day seems overwhelming if not downright impossible. I am better in some ways, but am so extremely fatigued that I have the energy for maybe one task per day. On a remarkable day, two. Simply scheduling an energy audit seems undoable, and I really must do it. My electric bill is off the charts — way too large for my small place. And I must also find out what has happened to my application for Medicare B. And apply for some other state services I may be eligible for now. I am still not unpacked — haven’t been strong enough. Haven’t been able to think clearly enough to organize. One of the reasons I put off the energy audit is that I’d like to have a few more things put away and have easier access to all things electric. Hasn’t happened yet.

    On top of it all, I am grieving that the life I planned for is completely gone, forever. This takes far more energy that I would have guessed. Small wonder I find moving forward near impossible.

    In spite of all this, I think I am a little better, post surgery, although it is nearly impossible to tell only seven weeks out what with all the fatigue. I still need pain meds, although not very much, mostly for Lyme pain. But I’m not writing (reflected in lack of blog entries) or creating any art. A very bad sign.

    I read a meditation last night that asked me what gifts I would ask from the Universe to help me through this difficult time. It has never occurred to me to ask for gifts, and I found it impossible to think of anything to ask for since every good thing I have wanted seems to be taken away from me.

    So, I guess if you read this, send good thoughts my way, and wish me the energy I need to do what needs to be done. That would seem like a miracle at this point.

    Blessings to you all.

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    Once More Unto the Breach, Dear Friends

    Although I’m not King Henry and I’m not battling the French, I am in need of a speech of valor.

    I landed in the ER this past Saturday, and was kept overnight until I could prove I could keep down semi-solid food. Ready for this? It was exactly a year — to the day — since I first had these symptoms (severe gut pain and nausea, leaving me doubled over and barfing up everything I’ve eaten during the past month, or so it seemed).

    In 2008, these symptoms culminated in five trips to the ER, two surgeries, a ten-day hospital stay, loads of unpleasant tests, including two colonoscopies within five days. Even so, I was left with inconclusive results and the likelihood that my symptoms would return. Possibly in the form of another gut obstruction.

    Once more, this past Saturday, all tests seemed inconclusive and every doc I talked to told me a different story. But this time I’m dealing with the U of M hospital, which is at least a research hospital. Perhaps these docs will actually try to find out what is CAUSING my symptoms. Not that I’m going to hold my breath. I see one specialist in two weeks. The other appointment hasn’t been set up yet. I’m supposed to call the hospital if I don’t hear from them in seven days.  Unless I land back in the ER.

    I’ll keep you posted. Once more.

    Back

    It’s been a while since I’ve posted, mostly because I had a terrible summer of mostly feeling bad. Same with fall, although there were a few good days (or sometimes hours) where some of you actually saw me!

    Since I last wrote, I’ve received these diagnoses via lab tests from my new doc:

    • Late neurological Lyme disease
    • Bartonella infection
    • Chronic Human herpes virus 6 and Epstein-Barr virus infection
    • Autoimmune reaction to wheat and dairy
    • Sensitive to eggs, almonds, peanuts, soy, and pineapple
    • Nutritional deficiencies
    • Hormone imbalance
    • Irritable bowel
    • Irritable bladder
    • Neuropathic, muscle, and joint pain

    The good news is that I have been able to stay on treatment for the past six weeks (yay – a first). It involves thirty+ supplements and drugs that I must take every day (including B-12 injections). And I am adding many other detox items to my protocol, including an infrared sauna, which we are expecting to get delivered this week.

    The bad news is that I’ve been doing relatively little writing and art. I’ve had to put nearly all of my creative energy into my healing protocol and cooking (since I really can’t eat much off the shelf any more – soy, wheat, dairy and eggs are in everything!).

    But I’m moving forward, thanks to my lovely partner-husband, fantastic friends, and a wonderful writing group and writing coach. I am also working with one of my favorite energy healers again, and am signed up to take some weaving and fiber-art related classes this fall.

    I’ll try to be better about posting regularly. Thanks for checking in, and don’t forget to let me know you were here by leaving a comment. It’s terribly isolating to be ill for so long, and I love to know when you’ve visited me.

    Cheers, and hope to chat soon!

    Elizabeth

    When Did I Get Infected?

    My friend, Sally, asked me this recently, wondering if Lyme wasn’t a mostly East Coast disease. I thought I’d give the long version response here, so I could give her a shorter answer by email. (And thanks for the good question, Sally!)

    My docs and I have traced my Lyme symptoms back to my childhood. It’s likely that I was first infected sometime after my family moved to Minnesota when I was ten, and then reinfected during one or more family vacations in Washington State (my test results indicate at least one strain associated with that area).

    I was probably reinfected again in NH (I had lots of rashes, bouts of flu, and memory problems in my early thirties), and probably experienced one more reinfection when I lived in southern MN in my late thirties. This is the one I think broke my immune system’s back, so to speak, and probably happened just before my “carpal tunnel” symptoms started, which I now know is a common symptom of Lyme Disease. I’ve learned that this pattern of infection and reinfection is very common.

    As you may know from my past posts, neuroborreliosis (a better name than Lyme Disease, since there are many more strains than the one associated with Lyme, PA) is epidemic. It’s reported in the US at a higher rate than AIDS and HIV, and is found in every state in the US and every continent of the world. The CDC does not require reporting, neither do most states, so the best numbers available are underreported by at least a factor of ten (according to the CDC) or as high as a factor of fifty (estimated by prominent researchers).

    Some Lyme Literate docs and researchers believe that most people in the US already carry the borreliosis bacteria. My doc believes that many common minor symptoms that go unreported or self treated (like headaches, memory problems and aches and pains we commonly associate with aging, PMS, thyroid and other hormone imbalances, asthma, allergies, back, neck, or joint problems, etc) may be caused by borrelliosis, possibly in combination with other bacteria.

    Lyme/borreliosis is called the “Great Imitator” because it can mimic almost any disease. Most people diagnosed with Chronic Fatigue, Fibromyalgia, and Rheumatoid Arthritis either test positive for and/or respond positively to treatment for neuroborreliosis. There is also recent research that points to neuroborreliosis as a possible cause of Alzheimer’s Disease, MS, and ALS.

    My doc’s theory (shared by many researchers) is that those of us who experience extreme symptoms are infected with more than one strain of neuroborreliosis bacteria, probably other types of bacteria (he calls it a “bacteria soup”), and probably have experienced factors that caused our immune systems to start losing the battle against this “bacteria soup.”

    Recently, I’ve started to feel that our current medical and social understanding of neuroborreliosis is comparable to how we understood AIDS and HIV in the 1970s and early 80s. In twenty or thirty years, I bet we’re gonna look back on this time as the dark ages for Lyme Disease.

    Hopefully, by then there will be better medical technologies for prevention, diagnosis, and treatment of Lyme, just as there are now for AIDS and HIV. Believe it or not, this comparison is one of the few things that cheers me up these days, especially since the outcome for someone who has been infected as long as I have is grim.

    That said, I started treatment for Bartinella yesterday with a great deal of hope. I have a lot of sudden burning muscle pain, am very exhausted, brain-fogged, emotionally-rollercoastery, and I’ve had a few bouts of dizziness.

    But on and forward, I say! Think good thoughts, keep in touch, and 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. 😉

    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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