Author AMY TAN & her chronic Lyme... a very good read

Discussion in 'Lyme Disease Archives' started by victoria, Jun 8, 2007.

  1. victoria

    victoria New Member

    Here's excerpts about author Amy Tan's chronic Lyme, and I've broken up some long paragraphs to be more readable;

    typically she went thru many doctors and diagnoses, but had the resources to keep going and lucky enough to at least once get a positive Western Blot plus a good doctor - and did improve with continued abx.

    You will all recognize many if not all of her symptoms:

    http://www.amytan.net/LymeDisease.aspx
    Amy Tan on Lyme Disease
    I have late-stage neuroborreliosis. I have had this disease since 1999.

    My case is in many ways typical. Like many, I had little awareness of Lyme disease...

    I passed off my early symptoms -a stiff neck, insomnia, a constant headache, and a bad back followed by a frozen shoulder- as the unpleasant aftermath of too much airplane travel. I was often tired and jittery, but that, I reasoned, was the consequence of an active and exciting life.

    Who was I to complain? I had a wonderful life, ...I was rarely sick ... Even when I came down with the fever, aches and pains of the "flu" earlier in the summer, I had managed to beat it back without developing any of the respiratory sequelae. What a great immune system I had!

    When my feet grew tingly and then numb, I mentioned to my doctor that I had had an unusual rash earlier that year. It had begun with a tiny black dot that I guessed might have been a pinprick-sized blood blister.

    It grew more rounded as it filled, and then I either scratched it out or it fell out on its own, leaving a tiny pit and a growing red rash, which, curiously, did not itch, but lasted a month. Because that rash seemed so unusual, as did my neuropathy, I wondered aloud whether they were related. My doctor said no.

    Like many chronic Lyme disease patients, as my symptoms mounted and a scattering of tests proved positive for an array of seemingly disparate conditions, I was referred to specialist after specialist, until I eventually had consulted ten and had taken countless lab tests.

    Because one repeated test revealed my blood sugar inexplicably dipped from time to time into the 20s and 30s without symptoms, I underwent a 48-hour fast.

    An MRI revealed 15 lesions in my frontal and parietal lobes, but my doctors felt that was normal for a person my age; I was 49 at the time.

    A CAT scan showed an incidentaloma on my adrenal gland, and that was where I hung my hopes, on a tiny benign tumor, which I could excise laparoscopically in hopes of being rid of my enervating symptoms.

    Instead, after beginning steroids, the bizarre symptoms worsened. Hallucinations began, what I now realize were likely simple partial seizures, the result of lesions on my brain.

    I saw people walking into my room, two girls jumping rope... I also had strange episodes in which I behaved strangely but had no recollection of what I had done as reported to me by others.

    I apparently rang people up at midnight and talked in a wispy voice. I had flung laundry around the living room. My husband said I acted at times as if I were in a trance, eyes wide open but unresponsive to his and a friend’s questions. I now had nightly nightmares and acted them out, punching at lamps or my husband, and once landing on my head in a dive toward my dream assailant.

    By day, my memory was held together with friable threads, my concentration was as easy to disperse as blown dust, and when I tried to read, I often found by the second page that I had no idea what the book was about.

    When I wrote by hand, I reversed letters. When I spoke, I substituted words with like-sounding beginnings. I did not possess any of the skills necessary to write fiction, for I was barely able to traverse the distance of sentence to sentence, let alone keep in mind a narrative...At times, when asked what I was writing, to my horror, I could not remember...

    I no longer dared get behind the wheel of a car ... When I did venture out on foot, I would sometimes find myself lost in what I knew was a familiar place, my neighborhood of thirty years....

    I would panic, certain I was losing my mind and developing dementia ... My anxiety was a hundredfold of what was warranted, even in a post 9/11 era. Eventually, I could no longer leave my house alone.

    In any case, it hurt to walk too far. My muscles were stiff, my knees and hips ached. And I was almost too tired to care anymore.

    Let me add here that my doctors were affiliated with major urban hospitals, were tops in their department... Not once did they raise the idea that I was a hypochondriac... (lucky her!)

    Actually, one doctor had considered the possibility that I was infected with a spirochetal bacteria, and he gave me an ELISA test, which was negative -not for Lyme- but for syphilis.

    I turned to the Internet, which is where doctors believe patients catch terminal illnesses, that is, whatever disease they see described before them on the terminal. And there I saw that an ELISA was also used to screen for Lyme disease.

    Further reading led me to see that all my symptoms could easily fall under the multi-systemic umbrella of borreliosis. Further sleuthing gave me the name of a Lyme specialist, someone my other physicians acknowledged was "a good doctor."

    My Lyme specialist considered (my) history of (symptoms)... He ordered a complete battery of tests from IGeneX, a lab specializing in tick-borne illnesses, to check for not only Lyme disease, but its common co-infections. Two weeks later, I learned I was positive for Lyme on the Western Blot. My doctor told me that the test only confirmed what he already knew.

    Let me hasten to add that not all chronic Lyme patients test positive on the Western Blot, at least not at the levels set by doctors who follow CDC surveillance criteria as diagnostic....

    I know this firsthand because after I started antibiotic treatment I took part in a study in which my blood was sent out to five different labs for the ELISA and Western Blot. The results were all over the place -with Lyme-specific bands lighting up in one lab and not the other.

    There was almost not a single consistency. In addition, I had a negative ELISA test but a positive PCR, that is, I had DNA evidence of borrelia in my blood. And this was nine months after I had started antibiotic treatment.

    Like many late-stage neurological Lyme patients, it took a while for symptoms to begin to lift. A day after starting antibiotic treatment, I became feverish and ill with the classic Jarisch-Herxheimer reaction...

    Today, I can once again write fiction, speak at conferences, and walk in my neighborhood alone and without anxiety and panic. I’ve been under treatment now for over a year. I consider myself 85% improved from where I was a year ago.

    I still have what I call memory black holes when I am tired, and I have neuropathy in my feet, which at times becomes too painful for me to walk more than a block. I know that my late diagnosis means I am in this for years, perhaps even for life. But at least I have my mind back.

    As a patient, I have joined a club of people with a stigmatized disease that many doctors do not want to treat. While I have been lucky enough to find a doctor who is willing to provide open-ended treatment -and I have the means to pay for it- many of my fellow Lyme patients have gone without appropriate care. As a consequence, they have lost their health, their jobs, their homes, their marriages, and even their lives.

    ...Lyme disease is more prevalent than most people think. It is more difficult to diagnose than most doctors think. It requires more research before we know how it can be adequately treated, and one day, cured.

    In the meantime, my advice ... is to be aware and be informed. Realize that Lyme disease has been reported in every state except Montana. The CDC estimates the actual numbers of those infected each year is at least tenfold of what is documented as cases...

    For more information on Lyme Disease, a Lyme-literate physician, or LymeAid4Kids, see: www.LymeDiseaseAssociation.org

    For information on research on Lyme Disease, see www.ilads.org

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    The only thing I have to add is that not everyone gets a rash... Only about 60% if that, do.

    all the best,
    Victoria

    [This Message was Edited on 06/08/2007]