SAD but HOPEFUL at the same time...

Discussion in 'Lyme Disease Archives' started by victoria, Aug 28, 2008.

  1. victoria

    victoria New Member

    Sad but hopeful story about one man's experience with Lyme etc...

    Excerpts from article at
    Community Times, Westminster, MD

    Carrie Ann Knauer 27.AUG.08

    It began with a tick bite. Then there was the rash that spread across his chest and itched more than poison ivy.

    After a few weeks, Scott Kirk had enough. The diagnosis? Rocky Mountain spotted fever... After taking some medication, he was back to normal. That was in the summer of 1974.

    Kirk said 1986, he was bitten again while... camping in upstate New York. He didn't see the tick this time, but had a big red spot on his left hand that he knew meant he had been bitten by something. A bull's-eye rash marked the spot - the telltale sign of Lyme disease.

    But at that time, Kirk had never heard of the disease.

    "I didn't know anything about it back then. Nobody did at the time," said the 52-year-old Woodbine resident, who was not diagnosed with Lyme disease until 1994.

    Lyme disease has only been formally recognized since the 1970s, and the medical field is still struggling through the complications of how to recognize it beyond its first stage when the erythema migrans rash and arthritic conditions present themselves.

    The tests for the disease have not been standardized, nor are they very reliable. As a result, an untold number of people who are infected are not diagnosed each year, and the damage can be irreversible.

    ...people who have lived through these undiagnosed conditions urge others with similar symptoms to push their doctors for more tests until the source of their health problems are revealed.

    Historically difficult to diagnose

    In Kirk's case, once the rash went away, he forgot about it. Then he started having problems with joint swelling and pain. Before too long, he started having dizzy spells.

    It would come and go, he said, until one day at work as a property supervisor in Hunt Valley, he collapsed on the floor.

    He was taken to Greater Baltimore Medical Center hospital for a week where he underwent CAT scans, MRIs and a host of other tests, he said. . . but no one could pinpoint the reason.

    While many people think of joint pain and fatigue as the worst that can happen with Lyme, the disease can attack the immune system and cross over to the brain, which is what was happening to Kirk.

    Sometimes he would hallucinate or mutter uncontrollably, he said, so badly that he was admitted twice into Shepherd Pratt, a behavioral health facility in Baltimore.

    "...nothing was helping. It was getting worse," Kirk said.

    Then ...after about eight years of experiencing his mysterious illness, he saw an article in Reader's Digest about Lyme disease, including a questionnaire about 56 different symptoms.

    Kirk took the test and answered "yes" to 53 of the symptoms; the other three were exclusive to women.

    Kirk said he went to several doctors and asked about Lyme, but without any evidence that he had been bitten by a tick or had the diagnostic rash, they wouldn't test or treat him, he said.

    Finally, he found an infectious disease doctor who was willing to test him. The doctor ... sent (the blood) to a lab in California for Lyme testing. Sure enough, the results confirmed that Kirk was highly infected.

    While Lyme cases that are quickly diagnosed can easily be treated with a few weeks of oral antibiotics, Kirk's case was so severe that his doctor thought he would do better on IV treatments of antibiotics.

    Over the years, Kirk has gone on and off treatments, depending on how bad his symptoms and overall health are. He estimates that he has seen more than 60 doctors since he contracted Lyme disease. He has also spent several years in a wheelchair, then used a walker, and still relies on a cane.

    His brain will never be back to where it once was, he said, but Kirk has adjusted to his new way of life. He has been a member of the Central Maryland Lyme Disease Support Group off and on, and advocates for patients' rights to better testing and treatment in any case of possible tick-borne infections.

    "I wish some of the nonbelievers could go through one day in my body and see what I go through," Kirk said. "It feels like a war going on inside your body."

    ... in the case of Lyme, test results are only 40 percent to 60 percent accurate. And not all tests can pick up every strain of tick-borne diseases.

    Maryland is one of the top 10 states in the country for Lyme cases, with 22.6 people who contracted the disease per 100,000 people in 2006, compared to the national average of 8.24 people infected per 100,000...

    - Landmark News Service