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    • artur737 Study finds Lyme disease tests unreliable 30.12.05, 05:28
      Study finds Lyme disease tests unreliable
      By STEVE NERY
      Staff Writer
      December 29, 2005


      BALTIMORE — A Johns Hopkins University School of Medicine study reinforces what many people familiar with Lyme disease have been saying for years — existing testing methods are not accurate for detecting the disease in its early stages.

      Lyme disease, named after the Connecticut town where it was discovered in the ‘70s, is caused by bacteria generally transmitted to people by deer ticks, although it can be carried by other insects and mammals as well.

      If not properly treated, Lyme disease can lead to major chronic problems, including severe arthritis, fatigue, fever, headaches, and muscle and joint pains, according to the Centers for Disease Control. Ultimately, untreated Lyme disease can kill.

      In the early ‘90s, fewer than 10,000 cases were reported annually nationwide. In the past few years, the number has hovered at and above 20,000, according to the CDC, the vast majority of which were reported in June, July and August.
      There were 891 reported cases of the disease in Maryland in 2004, according to the Maryland Department of Health and Mental Hygiene.

      Different studies have estimated that for every case reported, however, between four and 12 cases go unreported.

      Hopkins doctors performed different tests in samples from 86 people with Lyme disease symptoms in 2001 and 2002, but did not release the report until recently. They determined some tests to be wholly ineffective, while combinations of other tests proved more successful.

      “Although the laboratory testing for diagnosis of Lyme disease is improving, the degree of sensitivity needed for a high level of assurance at the time of early Lyme disease is still not obtainable, even through combinations of various laboratory tests,” the Hopkins report concludes. “Thus, clinical suspicion based upon well-recognized cardinal features of Lyme disease is still the most appropriate approach.”

      The virus’ trademark symptom is a bullseye-shaped rash, which can appear anywhere within a month after the bite. The CDC says the rash shows up in only 68 percent of those diagnosed with Lyme disease, however, while others’ only symptoms may be headaches, pains, fatigue, chills or fever.

      Many people who come down with Lyme disease do not recall being bit — about half, according to the International Lyme and Associated Disease Society (ILADS). Further complicating the matter, the disease’s symptoms often mimic those of other illnesses, earning it the nickname “the great imitator.”

      The World International Lyme Disease Emergency Rescue (WILDER) Network, consisting of doctors and Lyme disease educators, lists 48 illnesses Lyme disease has been misdiagnosed as on its Web site, www.wildernetwork.org.

      Because of this, people such as Lucy Barnes, founder of the Lyme disease education organization “After the Bite,” do not have faith in many doctors’ ability to clinically diagnose the illness or provide proper treatment. Barnes, who was misdiagnosed herself in the early ‘80s, has helped thousands of others who have also been misdiagnosed find proper treatment for nearly two decades.

      Barnes said she would like doctors — including those at Hopkins — to gain a better understanding of the disease’s many facets as well as the importance of early treatment.
      For instance, on Hopkins’ online reference for Lyme disease, last updated in June, editor-in-chief Dr. John Bartlett’s comments contradict those of several other organizations, including the CDC.

      “Patients with chronic fatigue, joint stiffness and/or muscle aches should not have Lyme disease serology (blood tests) and should not receive Lyme disease treatment,” Bartlett’s post reads.
      Barnes, who is also working with doctors and the Maryland Department of Health and Mental Hygiene to attempt to establish Lyme disease treatment guidelines, advises anyone who suspects they may have the disease to contact the Lyme Disease Association at 1-888-366-6611 or to visit www.lymediseaseassociation.org or www.ilads.org.
    • artur737 Badania wykazuja, ze testy na borelioze sa slabe 03.01.06, 06:20
      Study finds Lyme disease tests unreliable
      By STEVE NERY
      Staff Writer
      December 29, 2005


      BALTIMORE —A Johns Hopkins University School of Medicine
      study reinforces what many people familiar with Lyme
      disease have been saying for years — existing testing
      methods are not accurate for detecting the disease in its
      early stages.

      Lyme disease, named after the Connecticut town where it was
      discovered in the ‘70s, is caused by bacteria generally
      transmitted to people by deer ticks, although it can be
      carried by other insects and mammals as well.

      If not properly treated, Lyme disease can lead to major
      chronic problems, including severe arthritis, fatigue,
      fever, headaches, and muscle and joint pains, according to
      the Centers for Disease Control. Ultimately, untreated Lyme
      disease can kill.

      In the early ‘90s, fewer than 10,000 cases were reported
      annually nationwide. In the past few years, the number has
      hovered at and above 20,000, according to the CDC, the vast
      majority of which were reported in June, July and August.

      There were 891 reported cases of the disease in Maryland in
      2004, according to the Maryland Department of Health and
      Mental Hygiene. Different studies have estimated that for
      every case reported, however, between four and 12 cases go
      unreported.

      Hopkins doctors performed different tests in samples from
      86 people with Lyme disease symptoms in 2001 and 2002, but
      did not release the report until recently. They determined
      some tests to be wholly ineffective, while combinations of
      other tests proved more successful.

      “Although the laboratory testing for diagnosis of Lyme
      disease is improving, the degree of sensitivity needed for
      a high level of assurance at the time of early Lyme disease
      is still not obtainable, even through combinations of
      various laboratory tests,” the Hopkins report concludes.
      “Thus, clinical suspicion based upon well-recognized
      cardinal features of Lyme disease is still the most
      appropriate approach.”

      The virus’ trademark symptom is a bullseye-shaped rash,
      which can appear anywhere within a month after the bite.
      The CDC says the rash shows up in only 68 percent of those
      diagnosed with Lyme disease, however, while others’ only
      symptoms may be headaches, pains, fatigue, chills or fever.


      Many people who come down with Lyme disease do not recall
      being bit — about half, according to the International Lyme
      and Associated Disease Society (ILADS). Further
      complicating the matter, the disease’s symptoms often mimic
      those of other illnesses, earning it the nickname “the
      great imitator.”

      The World International Lyme Disease Emergency Rescue
      (WILDER) Network, consisting of doctors and Lyme disease
      educators, lists 48 illnesses Lyme disease has been
      misdiagnosed as on its Web site, www.wildernetwork.org.

      Because of this, people such as Lucy Barnes, founder of the
      Lyme disease education organization “After the Bite,” do
      not have faith in many doctors’ ability to clinically
      diagnose the illness or provide proper treatment. Barnes,
      who was misdiagnosed herself in the early ‘80s, has helped
      thousands of others who have also been misdiagnosed find
      proper treatment for nearly two decades.

      Barnes said she would like doctors — including those at
      Hopkins — to gain a better understanding of the disease’s
      many facets as well as the importance of early treatment.

      For instance, on Hopkins’ online reference for Lyme
      disease, last updated in June, editor-in-chief Dr. John
      Bartlett’s comments contradict those of several other
      organizations, including the CDC.

      “Patients with chronic fatigue, joint stiffness and/or
      muscle aches should not have Lyme disease serology (blood
      tests) and should not receive Lyme disease treatment,”
      Bartlett’s post reads.
    • artur737 Z Newsweeka - Polka napisala 05.01.06, 21:01
      Newsweek International Edition
      *****
      DISEASES OF THE MIND
      Bacteria, viruses and parasites may cause mental illnesses like depression and perhaps even autism and anorexia

      By J. Ginsburg Newsweek International

      Dec. 1 issue - Olga Skipko has had the good fortune to live most of her adult life in the Polish village of Gruszki, in the heart of the Puszcza Bialowieska, one of Europe's most beautiful forests and home to wolves, lynxes and the endangered European bison. Unfortunately, the forest is also a breeding ground for disease carrying ticks. Skipko, 49, thinks she was bitten about 10 years ago, when she began having the classic symptoms of Lyme borreliosis, a tickborne nervous system disease: headaches and aching joints. She didn't get treatment until 1998. "I was treated with antibiotics and felt a bit better," she says.

      That was only the beginning of her troubles. A few years later, she began to forget things and her speaking grew labored. It got so bad that she had to quit her job in a nursery forest and check herself in to a psychiatric clinic. "I hope they will help me," she says. "I promised my children that when I come back home, I will be able to do my favorite crosswords again." Doctors ran a battery of tests and concluded that her mental problems were the advanced stage of the Lyme disease she had contracted years ago.

      Scientists have long known that some diseases can cause behavioral problems. When penicillin was first used to treat syphilis, thousands of cured schizophrenics were released from mental asylums. Now, however, scientists have evidence that infections may play a far bigger role in mental illness than previously thought. They've linked cases of obsessive-compulsive disorder, bipolar disorder and schizophrenia to a variety of infectious agents, and they're investigating autism, Tourette's and anorexia as well. They're beginning to suspect that bad bugs may cause a great many other mental disorders, too. "The irony is that people talked about syphilis as the 'great imitator'," says University of Louisville biologist Paul Ewald, "but it may be the 'great illustrator'-a model for understanding the causes of chronic diseases."

      Mental illnesses constitute a large and growing portion of the world's health problems. According to the World Health Organization, depression is one of the most debilitating of diseases, on a par with paraplegia. Psychiatric illnesses make up more than 10 percent of the world's "disease burden" (a measure of how debilitating a disease is), and are expected to increase to 15 percent by 2020. Much of this may be the work of viruses, bacteria and parasites. Psychiatrist E. Fuller Torrey, of the Stanley Medical Research Institute in Maryland, has found from studying historical asylum records that hot spots-higher-than-normal incidences-of mental illness can shift, much like infectious-disease outbreaks, which lends credence to the notion that infectious agents play a big role. "Mental disorders are the major chronic recurrent disorders of youth in all developed countries," says Harvard policy expert Ronald Kessler, who directs the WHO's mental-health surveys.

      Perhaps the most well known disease that's been linked to mental disorders is Lyme disease, which is caused by the Borrelia burgdorferi germ. First identified in the mid-1970s among children near Lyme, Connecticut, the disease has long been known to cause nervous-system problems and achy joints if left untreated. Now scientists are finding that Lyme disease can also trigger a whole smorgasbord of psychiatric symptoms, including depression. One New York man (we'll call him Joe) found out firsthand how debilitating the disease can be. When he began having bouts of major depression back in 1992, he had forgotten all about the tick bite he had gotten four years earlier. He spent two years in a blur of antipsychotic drugs, mental institutions, jails and suicide attempts. On a hunch, a doctor at a psychiatric hospital in New Jersey had Joe tested for Lyme disease. After an intensive course of antibiotics, Joe's improvement was dramatic and immediate. "I started to have this fog lift," he recalls. Still, he will probably have to be on psychotropic drugs for the rest of his life.

      Some psychiatrists fret that there may be thousands of people suffering from Lyme-induced depression without knowing why. Not only is Lyme disease tricky to diagnose-not everybody gets the circular rash, and lab tests still aren't wholly reliable-it can take a decade or more for mental disorders to set in. The U.S. Centers for Disease Control says that nine out of 10 cases of Lyme diseases remain unreported. There are 15 species of borellias-making them the most common tickborne disease-producing bacteria in the world.

      For its part, the parasite Toxoplasma gondii, which can be found in undercooked meat and cat feces, can lead to full-blown psychotic episodes. Some studies suggest that the parasite stimulates the production of a chemical similar to LSD, producing hallucinations and psychosis. Even when the parasite lies dormant in muscle and brain tissue, it can affect attention span and reaction time in otherwise healthy people. Researchers at Charles University in Prague have discovered that people who test positive have slightly slower-than-average reaction times and-possibly as a result-are almost three times as likely to have car accidents. That's a disturbing prospect, considering that the disease is so widespread: billions of people are thought to be infected.

      Even a simple sore throat can lead to psychiatric problems. Few children avoid coming down with a streptococcus infection, also known as strep. Scientists now think that one in 1,000 strep sufferers also develops abrupt-onset obsessive-compulsive disorder (OCD) in a matter of weeks. Strep bacteria trigger OCD by igniting an overzealous response from the immune system, which attacks certain types of brain cells, causing inflammation. Symptoms generally die down after a few months but can flare up again, especially if there's another bout of strep, says Susan Swedo, a childhood-disease expert at the National Institutes of Health. The most effective treatment, still experimental, is to filter out the misbehaving antibodies from the blood. Best is to treat strep early on.

      The specter of a depression germ or contagious obsessive-compulsive disorder is unnerving, but it also opens up many more treatment options-antibiotics, vaccines, checking for ticks. Geneticists believe that diseases may trigger the onset of inherited mental illnesses by activating key genes. Avoiding and treating infection may be just as important as the genes you inherit, and a whole lot easier to do something about.
      With Joanna Kowalska In Warsaw
    • artur737 Lyme disease is health crisis being ignored 09.01.06, 16:15
      Lyme disease is health crisis being ignored


      A Florida State quarterback is found half-naked and disoriented in downtown Tallahassee. Pop singer Daryl Hall cancels part of his national concert tour. Author Amy Tan is writing a new book about it.
      The picture is clear: Lyme disease has hit the front burner.
      Lyme disease is a major public health problem and growing crisis. It's the most prevalent bug-borne illness. According to the Centers for Disease Control and Prevention, new cases are reported in about 20,000 people yearly and this number represents a 10-fold underestimate.
      Lyme disease is caused by a complex bacterial agent carried and spread by ticks. The Lyme bacteria have the ability to evade immune destruction, entrench themselves deep within tissues and migrate throughout the body with impunity causing a multi-system illness that can be baffling to many physicians.
      The result is that one tiny tick bite can cause innumerable symptoms running the gamut from muscle and joint pain to heart disease to neurological and even psychiatric illness. Lyme patients may be misdiagnosed as having other serious diseases such as lupus, multiple sclerosis, rheumatoid arthritis and psychiatric disorders. The take-home message is Lyme disease may be hard to diagnose and difficult, if not impossible, to fully eradicate if not caught early.
      Why is that?
      First, there is no single reliable diagnostic laboratory test. The common two-tiered blood test cannot be solely relied upon for diagnosis. The initial ELISA screening test can give up to 50 percent false negative results, and just as disheartening, many laboratories interpret the second Western Blot test by highly restrictive CDC criteria that miss many cases.
      Better tests are described in the medical literature, but haven't seen the light of day. So some patients seek more sophisticated testing by approved reference laboratories
    • artur737 A Long, Strange Trip 10.01.06, 19:38
      A Long, Strange Trip: One Woman's Journey Through The Land Of Lyme Disease

      This is a long story, and I don't know how to make it short. It was born from a journal I began when I was descending into the underworld of a malady which challenged me to a profane and mysterious duel. It began as a way to keep myself sane. But the ending is definitely still up in the air.

      On the morning of May 19, 1998, as I stood in front of the bathroom sink brushing my teeth, I suddenly lost the use of my right arm and hand. A quivery, ticklish feeling traveled like lightning from the shoulder to the fingertips; paralyzed, the arm dropped down into the sink, hit the enamel hard and broke the skin. I didn’t really think I was having a stroke - I had no other symptoms at the time, and no risk factors - so, stoic and thinking positive (which hasn’t always been the case), I slipped the arm into a makeshift sling and went to work. Shortly after arriving there and explaining things to my worried co-workers, I felt a similar (though much lesser) weakness and shakiness in my left arm, and then painful spasms that started in the neck and ran down the entire outside of both arms, effectively pinning them down, completely helpless. When I broke out into a cold sweat and felt nauseous - who wouldn’t? - a friend insisted on giving me a ride to the nearest walk-in medical clinic. With mixed feelings, I took her up on it.

      After waiting three hours, a physician’s assistant and a doctor checked me over, but could make no sense of the problem. Not surprised, I went back to work, but couldn’t use my right arm and hand at all - without the sling, the limb just hung limply by my side. I had no strength or motor control in my hand; I could not even grip a pencil, much less write. My arm was too weak to hold up a thin piece of paper. This was getting mighty alarming. The next day, I was able to get an appointment with a local physician who, I guess, fancies himself a neurologist. He sent me for x-rays of the cervical spine, diagnosed a pinched nerve in the neck, and prescribed physical therapy - though he had no useful suggestions as to how I’d get this without any medical coverage!

      Since I knew there was a PT department at the local hospital’s satellite clinic and the hospital has a “charity care” fund, I applied for this and was accepted. My arm, though slightly improved, was so weak I could not lift it by itself to hold it on my stomach during traction, and I had an uncomfortable sensation of a “band” pulled tightly around the arm halfway between the wrist and the elbow. I could eat with the right arm only if I supported it with the left; I could type with the right hand only if I used the index finger to control the middle finger. I had a “tired” feeling between the shoulder blades, as if my neck would not support the weight of my own arms. My right hand was cold and purplish; I had a “ripping” pain along the outside of the right forearm; the ligaments in the back of my right hand quivered and rubbed. Whatever was happening here was entirely unnatural.

      A former Fine Arts major in college, I was now severely uncoordinated. Fastening buttons with my right hand was out of the question, nor could I manage to write anything more than my signature, and only then with enormous difficulty. My fingers simply wouldn’t work; I couldn’t turn a page, tie a bow, or pick up a coin from a smooth surface, even if that coin were a gold doubloon! As a stroke or accident victim might do, I was trying to compensate with the lesser-affected left side. All at once I was tremendously compromised, and very frustrated, not to mention worried.

      Most of the time I held my right arm up in front of me, fist balled like a claw and facing inward, and was very self-conscious about it. How could I answer so many people’s questions about how I’d “hurt” my arm? How could I allay the fears of those who cared about me, when I didn’t have a clue as to what was happening? As a library technician who used her arms and hands continuously, I began to feel completely useless to anyone. I wasn’t certain that the physical therapy was helping me, either, but I was loathe to give it up, since aside from shrugging his shoulders or raising his eyebrows and saying “I have no idea,” this was the only help my “neurologist” was providing.
      • artur737 Re: A Long, Strange Trip cd 10.01.06, 19:39
        Within just days of the incident with my arm, however - before I had even started the PT - odd things started happening to my legs. I had numbness and tingling in both calves, and very little feeling or strength in the right leg and foot - I could barely feel the pedals or pick up my foot when driving. Often, my ankles had a stiff, "foreign" feel. The sensation was like limbs that had “fallen asleep,” and now were half way back again - the most uncomfortable stage; instead of lasting just a moment or two, however, this was constant. When the tingling progressed to pain and I couldn’t sleep or even rest, I went back to the doctor. This, as I’ve said, proved completely fruitless. All I got was the brush-off. (Why do doctors so often make you feel that it’s a foreign concept to seek aggressive help when you’re feeling ill, and to do whatever you can to get better? Makes you wonder why they’re in business to begin with.)

        With no other recourse, I simply hoped everything would go away, as so many odd things I’ve had have eventually done. I concentrated on the beautiful late-spring weather, packing for a long-anticipated, long-term move to Southern California, and making myself as productive as possible at work. But in the mirror my eyes looked frightened, and my face was strained. Around this time I saw my family doctor, a really sincere guy who figured the leg problems were due to compressed disks in the back. Additionally, a knee problem had arisen by now - both knees were crunching loud enough for me to hear when I climbed stairs or arose from a sitting position, and the left knee wavered between stiffening up completely and feeling as wobbly as Jell-O. Sometimes I felt like I had to hold this knee in place when I drove! This, my doctor said, was no doubt arthritis, a fact of life once we’re over 40 - which I was, barely. But how does arthritis happen in the very blink of an eye?

        Then, by early June, the entire left side of my face went numb, as if I’d been shot full of Novocain. This went into the left side of the jaw and along the tongue, up the cheek, and toward the nose. My chin hurt, and felt “ticklish” - as if something were blowing on it. I had trouble swallowing, and a “gagging” sensation on the left side of my throat; I couldn’t move my mouth properly and had difficulty talking. My jaw was clicking audibly when I spoke or ate. In addition to this, my limbs, head or body would sometimes jerk convulsively - not so violently that anyone else would notice, but jarring and unmistakably abnormal. (Oddly, this happened only when I was resting!)

        At this point, I decided to pursue these symptoms with another doctor, and made an appointment with a neurologist whom a relative with back trouble had recommended. (I wasn't even sure if a neurologist was the right specialist to see, but it sure seemed it at the time, though I was only guessing.) To try to get the most out of this appointment - I had saved up my paycheck for this visit - I summarized everything on paper, and handed it to the young doctor to read before he examined me. He suggested a brain MRI to rule out MS, and if that were negative, a cervical MRI to check the peripheral nerves.

        A few days after the test, the doctor called me at work. By now, newer and even more unrelenting, exhausting symptoms had surfaced: I kept looking down at my upper arms to brush off the hair or cobwebs on them, and realized there was nothing there. Nonetheless, I had unrelenting “crawling” sensations just below the shoulders, and, over Independence Day, had developed what would prove to be one of the most difficult, most disheartening, most trying problems of all: around my mouth, all around the lips and down into the chin, a vibrating, biting, humming itch, as though there were a thousand bees swarming over my lips and the majority of them were stinging. My mouth literally throbbed with pain; under my bottom lip, the skin began to be worn raw by my constant rubbing at something that was there, but that couldn’t be seen. One area felt as though someone had taken a pointed instrument, heated the tip in a burner, and was now jabbing it at my lip. Even my nose hurt and tingled, as though it were frostbitten. On top of this, I started to have a peculiar urinary incontinence - hardly making it in time - and thought "God, I'm too young for this!"

        By this point, almost two months after whatever it was first hit, I was going downhill. I was putting in a day’s work, trying to be normal about it, then going home, wrapping up in an afghan in 90 degree weather, and violently shaking. I had been on a diet, but was now losing weight rapidly, and could barely even choke down a popsicle. I prayed, desperate, when what I wanted to do was put my fist through a wall. Normally strong and good-natured, I sat in my supervisor’s office and sobbed on the phone to this neurologist - “If I have to live like this for the rest of my life, I think I’ll lose my mind. Do you think there is anything you can do to help me?” The brain MRI was normal, he said, ruling out MS (though I myself never felt that this was a real probability, even though I did have some rather suspect symptoms). So what now? “Well,” he answered, polite but chilly, “I don’t really see any need to pursue things - I think it’s psychosomatic.”
        • artur737 Re: A Long, Strange Trip cd 10.01.06, 19:40
          The room grew dark; my heart turned over, frozen, in my chest. My eyes, had anyone seen them, may have looked like they’d caught fire. This doctor never had a chance for a rebuttal. “This is a not a road I’m interested in going down,”I shouted. “I am ashamed of you, ashamed that doctors are still graduating from med school with these ridiculous ideas. As if I have time to sit around and think up ways to make myself sick! You are mistaken. I know my body. I know there’s something wrong, but anyone who thinks it’s in my head is a whole lot sicker than I am.” (Later, I read in a book that when “middle-aged” women present with a written list of symptoms - especially vague neurological symptoms, such as difficulty swallowing, double vision, and numbness in the mouth - it’s common for doctors to assume their complaints are psychosomatic. Well, I’m guilty of all this, but I’m also guilty of disliking beets, having small hands, and not knowing every verse of “Just Like Tom Thumb’s Blues.” In other words, what of it?)

          Backing down, the doctor offered to send me to Yale or UConn for a consultation. “I’d hate to think you might have something terminal that I’m overlooking,” he said condescendingly. “My office will be in touch.” I never heard from him, of course, except to get a bill for a balance of $90, which I returned with a letter stating it wasn’t my practice to pay for services not rendered, and I hoped he could serve his subsequent patients better; his mistake was not in stating his opinion (which he did both brazenly and bravely); his mistake was in not believing me when I told him he was wrong.


          Frantic at this point, I called Columbia-Presbyterian Hospital in Manhattan, where my mother had been going for help with neuropathy. I couldn’t get in to see her doctor, but was given the name of another neurologist there. This doctor mentioned brachial plexus neuritis, something also suggested by an RN who did volunteer work at our library (the brachial plexus is a bundle of nerves - literally - just below the shoulder). The only problem was he couldn’t tie the arm thing and the leg stuff together, much less the mouth. Well, that’s Occam’s Razor. We all look for common links to make our jobs that much easier. What I didn’t know at the time was that there was, in fact, a glaring commonality to all these problems, and to others as well, but it would be a while longer until we found it. The neurologist sent me for the cervical MRI suggested and then dismissed by the previous doctor, but aside from some bone spurs (cervical ribs), nothing untoward showed up. With a sinking feeling, I got to the library early and devoured the Merck Manual, a book I'd never picked up before in my life. Was it vascular strokes? Thoracic outlet syndrome? (This was the working diagnosis for purposes of physical therapy.) Some type of inherited sensory neuropathy? Could be. But it was anybody’s guess.

          My legs had become so painful I could no longer stand in the shower; my ankles and the long bones in my calves and shins burned and seared with pain - not an ache, but a feeling that someone had scraped the skin away, thrown salt into the raw tissue, then set it on fire! The “fat” part in the back of the calves was virtually untouchable. In despair, I resigned my job prematurely; though my supervisor had done everything humanly possible to accommodate me, I was dazed with this physical assault, and falling to pieces. I dragged myself to bed, rubbing liniment on my legs and holding ice to my mouth, and woke up angry in the night that I hadn’t just died. Even the thinness of a sheet was too painful for my legs - never mind jeans. At times, my feet felt hot, as though I’d stepped barefoot in fresh tar. Often, my legs and the bottoms of my feet would “pulsate” - as if someone were snapping their fingers all over, stinging, from the inside out. My right leg and foot were twisted, curved inward, spastic. I was walking on the side of my foot - without shoes on, I could not walk normally.

          It was all completely baffling, and friends, family, and the library staff and patrons were appalled, sympathetic, and tremendously puzzled. One after another, they began to rise to the occasion, trying to find ways to help me - a competent, funny person who was falling apart before their eyes. “Are you sure,” they asked - one by one, they asked - “Absolutely, positively certain that you don’t have Lyme disease?”

          I had asked my family doctor about Lyme disease. “Is it possible,” I’d asked him, “That once you have it, even if you’ve been treated, it could stay in the body?” He was adamant. “Absolutely not,” he said. “Once you get the treatment you’re cured. Besides, your symptoms don’t suggest Lyme disease.” I believed him. I wanted to believe him. Would you want to entertain the possibility that there’s this terrible illness out there that you live in a pandemic area for, that almost everyone you’ve known has had at least once in the last ten years, and that it can’t be easily eradicated, no matter the stage? I have two wonderful nephews who live in a heavily wooded lot, for Pete’s sake! So I believed him, especially when the blood test I’d asked for (if only to satisfy everybody around me) came back negative. “Nope,” I said despairingly - “Had it once, guess it was cured.”
          • artur737 Re: A Long, Strange Trip cd 10.01.06, 19:40
            But one person wasn’t satisfied with that answer - one person who, like me when I’m functioning better, doesn’t take kindly to ambiguity. She gave me the name of a local fledgling political activist - a wife and mother who works part-time, and who had finally been diagnosed with (and treated for) Lyme after ten years of being terribly ill. I waited several weeks until I had some time alone, and then, still convinced that Lyme disease wasn’t anything for me to hang my hopes on, made a call. I ended up talking to this grassroots organizer for two-and-a-half hours; the very first thing she asked me was, “What’s your story?” For that, I realized I had to go back almost fifteen years. I took a deep breath, and cleared my throat; “It started,” I told her, “One day in June of 1984...”

            One day in June of 1984, I woke up feeling crummy - that “off” feeling you get when you’re coming down with something. Within a few days I developed a nagging headache and figured it was some type of virus or “summer flu.” I was young, strong, and (up until now at least) healthy, and wasn’t about to let something like this keep me down. Heading home from an errand one night, however, the headache turned fierce - I could barely keep my eyes open well enough to drive. By the time I reached my house, I was blinded by pain and had chills so violent they shook my whole body and made my teeth chatter uncontrollably. I was astonished to find that my temperature was 104°!



            Within hours, there was no part of my body that didn’t ache, from the back of my neck down into the shoulder blades, along both arms and into the hands and fingers, radiating down the forehead and chin into the chest and around to both hips, into the thighs and calves, all the way to the ends of my toes. Even my throat hurt, and my ears were ringing incessantly. By the next day, I had started to vomit. I needed a doctor, but was too sick to go to one (!) and besides, my family physician had recently retired. Finally, my mother got in touch with a young GP who agreed to make a house call.

            The doctor arrived and checked me over; he said he wasn’t sure if it was viral or bacterial, but I was definitely “working on something.” He opted for a wait-and-see approach. In my memory, I can still see him standing there at the foot of the couch with his black medical bag, chatting congenially with my mother. He represented hope - whatever it was I had, however ill, surely there was help. How odd that the last memory I have of being a “well” person took place when I was so sick! In the blink of an eye, my life was changing just as surely as if I’d been shot with a powerful bullet. Though no one knew it at the time, I would never be the same again.

            Two days later I was feeling no better, and on top of this, was having some difficulty breathing. My mother, who had faithfully been giving me Tylenol and cool compresses and holding a basin for me to throw up in, called and asked the doctor to come back. While we were waiting, mom noticed me scratching my left thigh incessantly. “What itches you there?” she asked. “I don’t know,” I said miserably, “I’m too sick to look. You look.” She did. And then from her lips to God's ears. “It’s a red rash,” she said, “Funny - it’s perfectly round, with a little bump in the middle - like a bull’s eye. I bet it’s some kind of bug bite. I wonder if it has anything to do with you being so sick?”

            We showed the rash to the doctor when he got to the house. “I thought as much,” he said, and immediately diagnosed a rather severe case of meningital Lyme disease, although in his notes from then, he refers to it as a “ricketsial illness from a tick bite.” Lyme was (as far as anybody knew back then) a fairly new disease about which not much was known, but which was appearing in our part of Connecticut (just across the river from Lyme) in epidemic proportions. I actually felt a little smug to be the first one in the family to have this interesting, “happening” new affliction.

            The doctor prescribed a 7-day course of Doxycycline. It took a couple of days before I was able to keep a pill on my stomach - I was close to being admitted to the hospital for “fluid replacement and parenteral [intravenous] antibiotics,” per the doctor’s notes (would that this had only occurred!)- but when I was finally able to keep the Doxycycline down, I began to feel rapidly better (although I had just twelve pills in total - yup, 600 milligrams altogether). Things were complicated by a sudden, dramatic episode of otitis - fluid in the ears and Eustachian tubes - but within a week, I was completely back to normal. I was 28 years old. I thought all was well. I was beginning a journey into Hell.
            • artur737 Re: A Long, Strange Trip cd 10.01.06, 19:41
              In July I started a demanding new job, and no one could have guessed I had ever been so sick. But I did notice a lingering aching, stiffness, redness and swelling in the toes of my right foot. I assumed it was a small “leftover” from Lyme, and since it didn’t bother me much, I didn’t give it a thought. Little did I imagine that I would soon become ill with myriad, mysterious and multiple maladies that would disrupt my work, threaten my sanity, fracture my life, and cripple me, maybe for good. I think we are all braver than we realize, but in all honesty, if I had seen the worst of the future, I'm not sure that I wouldn't have killed myself right then and there.

              By the winter of 1984-85, though I wasn’t feeling ill, my hair was falling out. It fell in clumps every time I washed or brushed it, but I was in denial. I had thick, fine, glowing brown hair, cut in a long shag style; every time I used a blow-dryer, I would see more pink scalp on top of my head, and cast my eyes downward. My mother was horrified. “You’re losing your hair,” she declared. “Am not,” I argued. When you’re not even 30 years old plus you’re female, I guess you don’t want to admit that you’re going bald! Furthermore, I was planning a trip overseas, had a new boyfriend, and was just too damned busy for all this nonsense. Finally, my hairdresser expressed his concern and suggested I see a doctor. I reluctantly agreed. Still having no doctor of my own, I made an appointment with a local internist.

              In light of the fact that this guy couldn’t pin down a physical diagnosis, he took the foolish way out, suggesting it was all in my head. He diagnosed stress. (This wasn't difficult, considering, as I had noted, I was 28, female, and losing the hair on my head every time I bent forward. Somewhat stressful? Yes, indeed.) Actually, I half believed this at the time - I didn’t feel particularly stressed out, but I didn’t feel sick, either, and hated to think I had some serious, hidden ailment. My hairdresser suggested I see a dermatologist. Our family has had its share of skin problems, and I called a doctor whom we’d all seen one time or another. He was mortified. “I have seen hundreds of cases of stress-related hair loss,” he told me. “This isn’t it.” Nor did it fit the patchy pattern of alopecia areata. I was sent for bloodwork, and showed a high “sed” rate - a measure of infection or inflammation somewhere in the body. “See a different internist,” he advised me, and recommended a female doctor a few towns away.

              I went overseas in the summer of ‘85 just as I’d planned - to Scotland, to visit relatives and trace the roots on my father’s side. By now, however, things were simply not right. I was beginning to feel nothing short of dreadful. I was in a deep depression and in the course of a year had lost about 50 pounds - considering I’d put on a lot of weight after college, this wasn’t bad, but I was overwhelmingly nauseous, with bouts of extreme dry heaves. I kept a basin handy in the kitchen and one under my bed; at work, I’d feel my mouth fill up with saliva and run to the bathroom, hoping no one heard me retching in there. I was dizzy and felt “grayed-out” when rising from a sitting or bent-over position.

              My balance was off as well - I would sway just standing still - but what was perhaps most frightening was a peculiar shortness of breath, a sense of almost having to “remember” to breathe, rather than having it be the untroubled, automatic function it would normally be. I also developed an odd sort of apnea - a sudden "gasping" for air just before falling asleep. In addition to this, sometimes my breathing would seem frighteningly slow - the opposite of hyperventilation. Still, I was working, enjoying a social life, and remained firm in my conviction that eventually - soon, I hoped - all of this would be straightened out and cured.


              I liked the woman internist, who did more bloodwork and sent me to countless specialists for other tests. Though she couldn’t figure out what the problem was, she was scornful to the point of anger at the thought that this was psychosomatic or hypochondriacal. She asked me to come back for regular monitoring of my symptoms, hoping that eventually, something would “declare itself.” Before long, though, I was beginning to question my own sanity. As well as generalized anxiety and intrusive, obsessive thoughts, I started having panic attacks - something I’d never had before getting Lyme disease. These were classic, with the rapid heartbeat, tight chest, feeling of doom and unreality and of losing control, and they hit at random times in random places - my car, my office, my own living room. I had an extreme, over-sensitive reaction to familiar noises (an exaggerated "startle reflex")- the sudden ringing of a phone would cause me to jump and gasp, my heart racing madly.

              The kicker, though, was the virtually unexplainable difficulty in writing, typing, speaking, and thinking. I’d use the wrong letters, hit the wrong keys, stutter, reverse things, and find myself unable to say the right word. Everyone does this occasionally, but this was consistent and unrelenting. I felt like something poisonous had taken over my brain, and it was a lot more than stress or a broken typewriter keyboard.

              In early winter of 1986, while sitting at my desk, I had the first of what I call my “seeing stars” attacks - a buzzing sensation in my head, being able to see and hear but not speak, almost as if someone had come up from behind and hit me with a baseball bat, but no pain. These were seizure-like, lasted less than a minute, and came without warning. When I told my doctor what had happened, she admitted me to the hospital for a week of tests and observation. (Oh, those good old days when doctors could do stuff like this.) I got rested, but we got nowhere.
              • artur737 Re: A Long, Strange Trip cd 10.01.06, 19:42
                By 1987, I had seen three internists, a dermatologist, two neurologists, a cardiologist, an orthopedic surgeon, a gastroenterologist, a pulmonary specialist, a urologist, and an ear, nose, and throat man. Dozens of tubes of blood had been drawn; I’d had an EKG, a Holter (24 hour) heart monitor, an EEG, an MRI, a CAT scan, a visual evoked potential, an EMG (nerve conduction test), a glucose tolerance test, various ultrasounds, a barium swallow, a sigmoidoscopy, a lung scan, a pulmonary function test, a test where water is squirted in the ears to simulate vertigo, and several other things I don’t even remember. I was suspected, at varying times, of having (among other things) epilepsy, lupus, benign tachycardia, a brain tumor, blocked carotid arteries, ulcers, MS, mitral valve prolapse, thyroid dysfunction, diabetes, hypoglycemia, mono, chronic fatigue syndrome, and leukemia, as well as some as-yet unnamed, unheard of, unrevealed, mystical condition (which was nevertheless as benign and uninteresting as white bread, to be sure, and goodness, I'll just have to deal with it, won't I? After all, I look pretty good!) Except for testing positive for the Epstein Barr virus (which I was assured was a normal finding for just about everyone), borderline low blood sugar, a slight magnesium deficiency and that elevated sedimentation rate, everything came back normal. (And I was supposed to rejoice at this.) A far cry from the lifestyle I had envisioned for my 30's!

                The instant something was ruled out, the doctors dismissed my complaints or said they were sorry but they couldn’t be of help. The woman internist was frankly frustrated. “I know there’s something wrong,” she told me, “I just don’t know what it is.” I had been told by other practitioners, sometimes cruelly and sometimes kindly, that I was either making myself sick (a 28-year-old female decides to go bald?), that I was “acting out,” (just acting like I was bald, I guess) or that I was imagining things (I was only imagining I'd lost half the hair on my head). I needed a new boyfriend/a new job/a new hobby/you name it/ad nauseum (to a person for whom there are normally not enough hours in the day). As others have done, I found myself purposely denying or not mentioning some of my more esoteric symptoms in a desperate effort to sound more credible to my physicians - when in fact the information should have been helpful to them. In the long run, I'll never know if this was counter-productive.

                In the winter of 1986 I had reached the breaking point; I figured that if this was indeed “all in my head,” then someone, somewhere, ought to be able to fix my head. Desperate for help and unable to function, I checked myself in to the mental health unit of the local hospital. I stayed there for a month. This was of no benefit or advantage to me or to anyone there. The patronizing young staff spent the majority of their time having coffee behind closed doors, shacking tired patients out of their rooms and into the smoky, unventilated kitchen, and standing at a podium ringing a medicine bell. I felt that I was rapidly losing ground; something was terribly wrong, and this was not the place to start fixing it. I signed out, moved in with a friend, and was out of work for another four months. Luckily, I had good insurance and payroll protection. (Looking back, it is a miracle to me that I was able to work at all, and yet I did, and even did well, though it’s a very hazy memory to me now.)


                The next unfriendly thing to hit was irritable bowel syndrome (mistaken at first for a case of giardiasis - talk about hearing hoofbeats and thinking zebras! - but, to be fair, I had in fact been camping in a remote area near the Canadian border, and drinking from and washing up in a spring) and, on top of that, esophageal reflux - often, I would wake up in the night choking and gasping for air when something went down the “wrong way” in my sleep. I also had interstitial cystitis (or maybe it was neurogenic bladder) - I’d have all the signs of a bladder infection: pain, pressure, frequency, but a negative test. I developed asthma and began to have constant small nose bleeds and nasal and sinus infections. I had an inexplicable dry, hacking cough - I could not take a breath without coughing furiously. I had spasmodic bronchitis, and literally felt my chest and throat close up when I coughed. I had laryngitis - not the kind that makes you lose your voice, but the kind where your vocal chords swell and you can barely breathe. Strange skin rashes appeared in different places, especially red, pin-prick hemorrhages on the arms and legs, and bruises the size of small dinner plates. Friends and family couldn’t help but notice these big black-and-blues, and they were often very scared at the sight, thinking I was bleeding internally from some undetected, life-threatening disorder. And by this time, I hardly cared.

                I was hit with a low-grade (99-100 degree) fever which lasted for at least a year. I had chest pain, rib cage pain, and painful breathing, which was diagnosed as pleurisy. My knuckles were swollen, painful, and very red (a doctor commented that my hands looked “awfully white;” in contrast to my knuckles, of course they did!) I had a bad stiff neck with breathtaking, "stitch"-like pain radiating through the upper back, as well as sciatic nerve pain and a sensation of a tourniquet wrapped around my right leg. My female internist looked at me strangely when I made a casual comment about "those jabbing, shooting pains we all get;" bewildered, I realized then that we don't all get them, but I did. I had occasional Reynaud’s phenomenon, and severe pain in the balls of the feet; I could barely make it downstairs in the morning - it hurt to put any weight on my feet at all.

                I felt so ill and so terribly nonplussed; before, any time I’d been sick, I’d gone to a doctor and gotten treatment, or gone to bed for a day or a week and gotten up, all better. This wasn’t happening now. I was spending the majority of time considering that this must be how it feels when you’re run over by a truck. I was turning down invitations from friends and family (who, to their credit and mine, never doubted for an instant that I was in anguish), saving my energy for work; I had to make a living, but any plans of striking out on my own or forming any permanent relationships were blurs in the background. My life was on hold; my existence was one of savage mystery.


                Finally, my female internist decided to test me for Lyme disease. “I wonder if maybe that time in 1984 it wasn’t completely eradicated,” she said. In some excitement, the doctor’s office called to say the test was positive. But there was no “Eureka, there’s a God in Heaven after all!” reaction from me - none that I remember. I wasn’t shocked or surprised or even inordinately pleased; this was meat-and-potatoes stuff - okay, put me on drugs already so I can get on with my life. And so she did - mega doses of Penicillin. Then the office called back and said they’d sent my blood to the almighty CDC for confirmation, and it had come back negative after all. Now, thinking back, I wonder: why was everyone so very quick to conclude that the negative test was the correct one?
                • artur737 Re: A Long, Strange Trip cd 10.01.06, 19:43
                  As the 1990s approached, I was still extremely ill and nowhere near a diagnosis. My woman internist had left her practice and gone on to be a corporate physician; I found a new family doctor, who stated that I was one of his stranger cases, though happily he never mocked me or suggested I was making things up. But there was nothing we could do to cure or even alleviate this sickness. I - a person so afraid of drugs I would often go back and sit in the doctor’s office after filling a prescription, in case I had some sort of horrible side effect - had been put on nearly every type of medication: Tegretol for the “seizures,” Carafate and Zantac for the esophagitis, Reglan for nausea, Bentyl for the IBS, Inderal for the rapid heartbeat, some sort of calcium channel blocker, Elavil for depression, Tranxene for anxiety, Feldene for muscle and joint pain, Macrobid for the bladder symptoms, Antivert for dizziness and balance problems, bronchial dilators for the asthma and shortness of breath, steroids for the hair loss, asthma, sinus attacks and pleurisy, and countless short courses of antibiotics for the sinus infections. After I changed jobs, lost my insurance and had to start paying for these drugs out-of-pocket, I managed to max out three major credit cards!

                  Interestingly, the steroids didn’t made me feel worse, though they are by all accounts contraindicated in Lyme disease. However, antibiotics often did make me feel worse - at least at first. (Sometimes, in fact, I would feel lousy enough to question whether they were even working.) Was this a "Herxheimer" reaction? Were they, in fact, killing off spirochetes, a few here and there, enough to "damp down" this illness and probably prevent me from ever showing another positive antibody test to Lyme, although I was never truly cured? At one point, I told my doctor to knock Ceclor off the list of antibiotics he could prescribe for sinus, since every time I took it, I'd have a mildly crawly, itchy feeling under the skin on the upper arms. I assumed it was an allergic reaction. But a crawly, itchy feeling on the upper arms also hit me along with this new onslaught of symptoms in the summer of '98 (though it was far from mild) and no Ceclor was involved then. So...now I wonder.

                  By this time I did indeed have chronic, crippling fatigue. I started out by having to stop and rest halfway through a shower and ended up by having to crawl from the couch to the bathroom - I did not have the strength to breathe and do something else at the same time. Sometimes, I would be overcome with sleepiness and the need to pull over while driving. Not only was I getting night sweats, I had drenching cold sweats in the daytime, with or without exertion. At times, these sweats were so annoying I had to stuff a towel down the back of my blouse. Sweat would also bead up on my chin just below my bottom lips, and in back of my knees. Sedentary, I would have a normal temperature, but spike a fever the moment I got up and started moving. One day while cleaning house I was struck by a feeling of hot water being poured into my lungs, and a week later, coughing and exhausted, was diagnosed with mycoplasmic pneumonia. After this, one lung or the other would often feel like it had virtually collapsed - that there was no air moving in or out at all.

                  I had sudden bouts of hypothermic body temperature, too. I would start to feel chills and begin to shake, and would find my temperature very below normal - the lowest reading was a scary 95.5°! My face, in contrast, would be flushed and burning hot when this happened. I’d cover myself with as many blankets as I could - an electric blanket if possible, it worked faster - and ask someone to make me something hot to drink, even if it was hot water from the tap. As soon as I could, I’d take a hot shower. This worked to raise my temperature to a manageable 97° or so. This occurred independently of environmental temperature, or for that matter, of anything else.

                  By now I was gaining weight - in fact, in ten years, I gained about 75 pounds (though to my credit, I’d given up smoking along the way - and I’ve finally lost it again). At times, I had what could only be described as an “icy” pain in the breasts, though a mammogram showed no abnormalities. I had gingivitis, an episode of trenchmouth, a painful spot on the roof of the mouth I was told was an epithelial ulcer, oral thrush, and tiny red sores along the tongue. I had trouble swallowing food, and developed a habit of waiting until there was a beverage on the table before I took a bite, to help wash everything down. I had muscle twitches in the eye area, and fasciculations (visible rippling under the skin) in the upper legs and the backs of my hands. One disturbing manifestation - thankfully short-lived - was trigeminal neuralgia, sharp, stabbing, “icepick” pains in the temples.

                  I had whole-body stiffness in the morning and one attack of extreme weakness (almost a paralysis) in both arms - I had to “prop” them up on the typewriter at work. This unusual phenomenon lasted several days. I had a painful spot in the right side of the base of the neck and was often unable to sleep on my stomach because it pushed my right arm backward, aggravating the pain. I had a “tightness” and a pulling sensation in the index and middle fingers of the right hand, and a general stiffness in that hand. At times, my right arm was so painful I couldn’t lift it to wash my hair. My legs were persistently heavy and weak, and I felt I had to hold onto something (a wall, a railing, a grocery cart) when walking. (A friend at work asked me once why I was dragging my foot - I didn’t realize I was.) The floor often felt like it was “rolling” beneath my feet, or that I was on an elevator or a boat, going up and down in waves. (I finally broke down and obtained a “handicapped” parking permit, although - not to make light of things - admittedly an upcoming Jimmy Buffet concert in a large outdoor venue had a lot to do with this. I wonder if the Hartford Meadows sprays for ticks?!)
                  • artur737 Re: A Long, Strange Trip cd 10.01.06, 19:43
                    I developed dry-eye syndrome, keeping a bottle of artificial tears in my purse and on my bedside table. Vision problems started with seeing “trails” of objects, i.e. my own moving limbs or doorways I walked through, and eventually progressed to double and triple vision in the right eye (made for confusion at traffic lights!) I was told I had “nystagmus” - my eyes would flicker spontaneously - as well as ocular stiffness and a “low blink rate.” My perspective was awry; I had terrible spatial confusion, typically placing a glass too close to the edge of the counter or setting it down too hard and breaking it, or missing a step (whether going up or down) and subsequently falling or jolting my back. This “spatial dyslexia” translated as well to a habit of turning on the wrong faucet, flicking my signal light the wrong way, or turning a lamp switch, thermostat, or jar lid in the wrong direction. (More than once, I’ve woken to a 90° house or tackled a dishpan full of dirty dishes to find that I’d filled it with ice cold sudsy water!) In addition to this, I began to have difficulty “recognizing” things when driving - familiar landmarks lost their meaning; I stopped at green lights, made wrong turns, or drove past my destination, even in territory close to home. I could rarely remember how to get to the same place twice. My short-term memory, retention and concentration became so limited I felt stupid and flummoxed, constantly apologetic.



                    In 1996 I was at a tag sale when my hands began to burn with sudden “pins and needles” and a true heat sensation; the only thing I could think of to do for relief was to plunge them into a bucket of ice. I actually asked other people to feel the heat arising from my hands, but of course, to my amazement at the time, they could not. For days afterward, my hands felt like they were being pelted with sleet or freezing rain. I could not hold onto anything properly. I was on Doxycycline at the time for a sinus infection, and I assumed it was a sun sensitivity reaction (though the sun never bothers me, except to burn my very light skin if I let it). A little more than a year later, in Ensenada, Mexico, I had an identical occurrence, and though it only lasted a day, it then developed into an itchy, bumpy red rash on both hands and arms. Again, I’d been taking Doxycycline. Allergy? Sun poisoning? Or Herxheimer??

                    I had high-pitched ringing (really, a squealing) and hearing loss in the left ear and unusual chemical sensitivity, especially to odors - even pleasant ones, such as aftershave and air freshener. Often, exposure to these would cause not only headaches, but burning in the windpipe and a feeling of anxiety. One day, while riding in a friend’s car, I developed a sudden numbness in the chin and along the left side of the mouth and jaw - a precursor to what would come years later. Drooling and aggravated, I went immediately to my family doctor who diagnosed it as Bell’s Palsy, though the eye was not involved. In a few days it went away.

                    One important thing my new doctor did do was refer me to a local rheumatologist I hadn’t seen before. The rheumatologist, too, was gracious, and wasted nobody’s time suggesting that I was inventing or imagining things. In fact, he strongly suspected a non-specific connective tissue disease akin to lupus - maybe mixed connective tissue disease, maybe dermatomyositis, maybe even lupus, though repeated (and very extensive) tests were negative for this. He did find that in addition to the high “sed” rate, I had an elevated “CPK” level - CPK stands for an enzyme thrown off into the blood by wasting or inflamed muscle tissue. But we had no real explanations.

                    Though eventually the crippling fatigue abated, it never went completely away, nor did any of my other symptoms; they simply waxed and waned. I’d have a period of good days - a “remission” - and then sit back in resignation while whatever this thing was moved in again. Thankfully, my hair stopped falling out, but would never grow back. I wasn’t the only one around who had bizarre, annoying, bothersome symptoms; all too frequently, I’d speak with a friend or acquaintance and hear puzzling recollections and theories from frustrated, often incapacitated people, and though I was more severely affected, it seemed that something in the area was in some way attacking us all. You would hear of a sudden stroke - a close call with heart block - a disfiguring arthritis, even (and most tragically) in young children. In so many cases, the “attacker” was found to be Lyme disease. Were we really in this much trouble???

                    I’m pretty self-actualized, I think. In the years since I’d first gotten sick, I’d moved through the seven stages of loss: shock, denial, grief, anger, depression, bargaining, acceptance. If this was the way it was going to be, I had to live in spite of it. But I never made plans too far into the future. Along with all the damning physical perplexities, I continued to have anxiety, panic attacks and, now, night terrors; tremendous (and understandable!) irritability, overreaction, and easy distraction; depression that would later be found to be bipolar; difficulty concentrating and memory loss; and a haunting, all-too-vivid recollection of a summer day in June of 1984 when afterward, nothing was ever right.

                    The rheumatologist was sympathetic to the ferocious new symptoms that appeared in the spring of 1998, especially since they followed a fairly long period of me feeling good - really, better than ever. I wouldn’t have considered a cross-country move in my wildest dreams, otherwise! (What caused these sudden problems after an almost total resolution of symptoms? Well, I’d been on a constant and extensive regimen of antibiotics for seemingly never-ending sinus infections, but had felt so great I’d gone for months without them prior to this flare-up. A friend familiar with Lyme theorizes that that was just long enough for something to get a foothold, which is a very frightening thought indeed.) When the neurologists I’d seen couldn’t come up with anything, and I went back to this doctor in total despair - a side of me he’d never seen - he quickly got me an appointment at the Neurology Clinic at Yale. “This is more than I can handle,” he said, “We need to get you down there, get some tests done, at least get some things ruled out.” He now suspected some variant of adult-onset muscular dystrophy. Crazily, neither of us brought up the possibility of long-term tick-borne illness.

                    I was now on State medical assistance and pending Social Security Disability, a situation I couldn’t have predicted even in my wildest dreams or worst nightmares; I’d lost out on the perfect apartment in California and forgone a promising job interview; and, there was not one minute - not one second - when I didn’t have indescribable pain. While feeling bad was a long way from terra incognita for me, I had no map for this country, and my compass was spinning out of control. I had thought there were dark times in my life before, but this was proving the darkest time of all.
                    • artur737 Re: A Long, Strange Trip cd 10.01.06, 19:44
                      I saw a personable, patient young associate professor at Yale’s Neurology Clinic, and was impressed and relieved at his serious attitude toward what was going on. He drew blood again, scheduled me for another EMG, and mentioned the possibility of a muscle biopsy. During the EMG he invited my mother and sister-in-law into the testing room, and explained to us in detail what the needles and electrodes were doing, and how this testing worked. Basically, the EMG was normal - apparently in my case the nerves were sending the muscles the proper impulses and at proper times. “Now we know you don’t have MD, Lou Gehrig’s Disease, or Myasthenia Gravis,” the doctor explained. In addition to this, my bloodwork had also been unremarkable - in fact, for some unknown reason, both the sed rate and the CPK level had dropped! “At this point, I don’t know if I’d want to proceed with a muscle biopsy,” the doctor said - “I have a feeling it won’t show us very much, and it is an invasive procedure.” (As if I cared about that!) “But there’s no reason why we can’t try to treat your pain,” he continued. “There are medications that we can use the try to make you feel human again, and there’s the pain clinic, too, if all else fails.”

                      I had called my family doctor and asked him for painkillers long before this, and though he knows I’m afraid of this type of medication and wouldn’t ask for it unless I was truly desperate, he suggested I take Nuprin. Now, finally, someone in charge seemed to comprehend the seriousness of the situation - I’d had to quit work, for Heaven’s sake! - and was offering at least a palliative remedy. I had wondered (and still do) why no one seemed able or willing to help me, when I was ready to consider amputation if all else failed, weighing the disadvantages of pain over no legs at all.

                      I was put on Neurontin, an expensive anti-convulsant that has shown good results in controlling deep nerve pain. Though I felt slightly drunk and sleepy and developed an incredible appetite, I did notice an immediate - though not dramatic - response in my legs and ankles. Nothing was helping my mouth, but I was finally able to sleep at night and could carry on a conversation without feeling weak with pain. Searching for alternatives, I had also experimented previously with a Canadian herbal supplement called “Km,” with my own researched vitamin and mineral regimen, and, now, with the ancient Eastern practices of acupuncture and magnet therapy, and got good results from what I could afford. I was also learning a brand new vocabulary - words I wish I had no use for, like “dystonia” and “myoclonus” and “hyperperacusis” and, most painfully, “Bannwarth’s syndrome.”

                      Still, I was disappointed that no one had hit on the cause of the problem, a treatment, or a prognosis. My family felt powerless to help. Calls poured in from friends, who offered luncheon dates, rides to doctor’s appointments, and a sympathetic ear. They were also indignant that no one seemed able to get to the bottom of things. “Are you sure,” they asked - one by one they asked - “Absolutely, positively certain that you don’t have Lyme disease?” I was pretty certain - but I was about to get the education of my life.


                      When you have been alone in a dark place for almost fifteen years, a place of grim astonishment, bewildered denial, and incomprehensible pain, and someone or some thing walks in and suddenly snaps the window shade up, you can’t get enough light. Here at last was someone else, a living, breathing, human being, who had walked for miles in my shoes. Talking to a fellow sufferer was exciting, exhausting, enlightening, and entirely reassuring. I was not alone. Yes, there were other people with these symptoms, and more - and yes, of all things, these people did have Lyme disease.



                      Two-and-a-half hours passed with us interrupting each other, shouting “Yes!” and offering support through anguished recollections of doctors who did not believe. (One doctor had suggested to this woman that she was “obsessed,” and “needed to spend more time on her husband’s boat.” Would a physician suggest this to someone with strep throat, appendicitis, or a broken leg?) I learned that my new friend’s own doctor (who incidentally refused to consult with me because I was a "state" patient and she was in the process of discontinuing state patients) had had Lyme disease, and had spoken of crawling and stinging (and even “humming” and “buzzing”wink around the mouth - apparently a common effect of cranial nerve involvement (in fact, I would learn that a great many people with latent Lyme have numbness of the mouth, with or without Bell’s Palsy - and that a great many of my symptoms, not just this one, could be explained by multi-cranial nerve inflammation or infection - the double vision, the difficulty swallowing, and ringing in the ear, to name a few).

                      I learned that it’s not uncommon for infected patients to test negative until they’re treated - only then, when you kill off the spirochetes, do the bound-up antibodies free themselves to float in the blood and be detected. (There are numerous other reasons, too - recent medications, a tired-out immune response, a history of steroids and/or short-term antibiotics, dormant spirochetes, different forms of the disease, non-standardized lab criteria, etc.) I learned that there are several tests which can be done to help nail down the diagnosis of a tick-borne illness: a spinal tap, an antigen urinalysis, even something called a SPECT scan - something I’d never heard of. (Apparently it’s as difficult to culture spirochetes from blood or tissue as it is to find a needle in a haystack, though.) I learned that there was most certainly a reason for positional dizziness, low body temperature, and having to “remember” to breathe - that the autonomic nervous system, in charge of these functions, is only too apt to be attacked by Lyme. The inability to find the right word, to remember facts from one room to the next? Classic Lyme disease! (There’s even a name for it -“Lyme fog.”wink
                      • artur737 Re: A Long, Strange Trip cd 10.01.06, 19:45
                        In fact, I learned, there is no part of the body that isn’t vulnerable to Lyme, and it is a lot more than a skin rash and a few swollen joints that can be easily cured with a couple of weeks of antibiotics. Lyme is, I believe, the greatest of the “great imitator” diseases. And, in talking first with this quietly persistent peer and then with others at a Lyme disease support group meeting, reading books on Lyme, and checking out the Internet, I also learned of the shocking and unforgivable politics of Lyme disease.


                        “It might not be their fault,” someone said; “Doctors may just be ignorant about Lyme, and not realize that it’s as big a problem as it is. Or they might just be close-minded, and refuse to believe it.” Don’t get belligerent, we were advised - if we perservere, we will change their thinking and their practices, one doctor at a time. But a ridiculous number of doctors and hospitals are on the payrolls (ostensibly, as “consultants”wink of HMOs and insurance companies who don’t want to pay for extended Lyme disease treatment - especially IV therapy, which can easily cost thousands of dollars. This clouds the issue unmercifully. And real estate values and all-important tourism could drop dramatically once the word gets out that this is a dangerous place to visit, and you might not want to live here. So patients suffering from Lyme disease find themselves doctor-shopping and having to urge, manipulate, threaten, goad, plead, persuade, and beg even “good” doctors to help; guarantees aren’t necessary, but when they see firsthand the effect this illness, combined with this manifesto, has on the Lyme patient’s physical, financial, and emotional well-being (or if they themselves, or someone in their family, suffers Lyme), some doctors do try. Far too many more do not.

                        I spoke again to my Yale neurologist - advising him that what I was going to talk about may be “fightin’ words” to a Yale physician, since Yale is notorious for their initial enthusiasm in fighting Lyme and then a sudden, head-in-the-sand reversal. Surprisingly, he agreed that latent, chronic Lyme disease (a non-existent entity to many doctors) was very much worth pursuing in my case - and he agreed, while defending the Western Blot as a very accurate test, that numbers of patients were showing positive results after commencing treatment when they’d shown negative ones before. “If your rheumatologist recommends it,” he said, “I’ll refer you for treatment of Lyme.” (Later, though, I learned that absolutely no one at Yale will treat you with antibiotic therapy without that only semi-reliable Gold Standard: a positive blood test.)

                        Like the death of someone you love, this is sinking in gradually. I reach a point where virtually nothing surprises me, and then
                        • artur737 Re: A Long, Strange Trip cd 10.01.06, 19:48
                          points out exactly where, along the way, I had the opportunity for ample and proper treatment to eradicate the original infection!)

                          What’s the difference between “chronic” and “recurrent” Lyme? Does Lyme aggravate or even activate other conditions? Do other conditions somehow predispose a person to Lyme? How long must a person remain on antibiotics to effect a cure or remission? (Lyme patients are as aware as anyone of the dangers of overuse or misuse of antibiotics, and would be happy not to have to take them at all, with their cost and potential side effects. However - maybe we ought to be asking the all-knowing insurance companies this - is there any other choice?) Which antibiotics are best for killing tick-borne bacterium - bacterium that cloaks itself in surrounding cells, that mutates into resistant forms, that feeds on whatever it can find in the body, that brings in malevolent co-infections, that lodges deep in tissues, joints, nerve and bone? As was the case some years ago with PMS, some people are now blaming Lyme disease for criminal acts! Is this reasonable? Is it likely? Will it continue?

                          There’s a newly approved Lyme disease vaccine - mysteriously rushed to the market even as some volunteers are still in the middle of clinical trials, touted on TV as the end of our worries, even though it isn’t guaranteed effective and isn’t even given to children. Who’s lending their financial and public relations support to this particular project? And why the rush? Okay, call me paranoid, but echoes of the Tuskagee Study rumble in the distance; it seems purposeless, but I suppose it’s actually possible that the powers-that-be are pooh-poohing the threat of Lyme not just because of the bottom line, but also because - in some experiment that went abominably awry - our government has accidentally done this to itself. These are the faces and the products and the politics of Lyme - which we can not afford to ignore. Do we wait, powerless and despairing - in some cases, dying - while chivalrous snippets of the scientific community posture for research funding? There are more things going on in the world than little old Lyme disease - aren’t there? So why is everybody spending all this time on debate? Is it our future that's at stake - or our pocketbooks??


                          A quote from Seneca says “A disease is also further on the road to being cured when it breaks forth from concealment and manifests its power.” If this is true, then Lyme disease should be wiped out any minute, since not only is it showing its face around every corner, it is also making no secret of its incredible, formidable, and awful strength. Physicians who dismiss Lyme’s threat, then, are not only hindering important medical discoveries, they are dismissing the Hippocratic oath’s important tenet: “First, do no harm.”

                          All ages suffer from Lyme disease and every generation has its pet cause, but many of us spring from an era of particularly fervent activism. We were not raised to take things sitting down. We are not comfortable taking “no” for an answer. In researching Lyme, horror stories surface not only of patients’ woes, but of persecuted physicians, hounded by state medical boards, threatened by the CDC, harassed by the board of health, and sued by insurance companies; frightened of seizure of their medical records and facing the possibility of loss of licensure, they “throw up their hands in frustration,” according to one well-respected author on Lyme disease. (Besides, there’s a form involved in the mandatory reporting of this illness, and it seems some doctors say that’s just too much paperwork.) Thus an “underground” network has evolved, with “Lyme-friendly” doctors who apparently throw caution to the winds, bravely practicing Lyme detection and proper treatment anyway. Forgive me, please, if I do not bow down and deify these heroes, or if I don’t cry a river of sympathy for their tormented colleagues. No more excuses, people. Get with the program. If patients can band together for strength, so can practitioners (including the doctor who told my activist friend that if one gets too involved in all of this, one won’t be available to treat patients any more. I thought long and hard about that and decided it’s a rather uncreative cop-out). Physician, defend thyself!
    • artur737 Re: "Sezon na kleszcza" 10.01.06, 19:48
      I haven’t bothered to look up Webster’s definition of “hypochondriac,” but I’d assume it’s someone who exaggerates and complains about minor discomforts, or thinks every headache is a brain tumor. By strict contrast, Lyme patients tend to underplay their symptoms and to plow through all of the pain, functioning under unimaginably difficult conditions. Some researchers think this results in the underdiagnosis of Lyme. We don’t always need to be so phlegmatic, I guess, but that’s typical New England (not to mention survival) behavior. There are many, many moments when I come close to “losing it” - to just giving up, and not wanting to go on like this any more. But then that moment passes, and I live until the next one. Though I did long ago accept the fact that I am imprisoned in a land of pain and uncertainty and made a decision to try not to dwell on it, I never, ever gave up the quest to find an answer, and in doing so, to find some concrete help. (Whether or not "down time" is actually beneficial to Lyme sufferers has never been one of my options to explore, I'm sorry to say!)

      Do I really think that the first time I got Lyme disease was in 1984? Of course not - I grew up here, and was outside most of the time; there were just too many odd summer “viruses” among us - too many unexplained sore throats and swollen glands, stiff necks, headaches, rashes and fevers - to be coincidence. Have I been bitten and infected again since 1984? I’d say that’s extremely likely. In fact, my whole family has been bitten by ticks, diagnosed with and treated for Lyme disease - hopefully successfully, though I am not unconcerned. My mother's neuropathy, which now necessitates her walking with the help of a cane, is idiopathic, and both her mitral and aortic heart valves were so completely destroyed she needed mechanical replacements; my father has odd skin rashes that respond, now and then, to antibiotics, and the slightest, lightest touch to his face sets off intense itching, far more suggestive of neurological rather than dermatological involvement. My brother has noticeable permanent damage from two severe episodes of Bell’s palsy (once on each side) and my sister-in-law, who was bitten while pregnant with her last child and treated with Amoxicillin, gave birth to a beautiful baby boy - albeit one with a mysterious fever; my newborn nephew needed IV treatment with Gentamycin prior to discharge! Not all of us were tested, but of those who were, only I came up positive - and then, only with the lowly ELISA. The main thing is we all want a chance to be well again, and we’re not backing off.

      I would have loved to have been able to make this story shorter (at least twenty pages if you’re ready to hit “print”wink, but how in the world do I encompass a decade and a half of history in a page or two? I also realize that this is an awful lot of reading about physical symptoms, and that might be trying or boring, but in order to get this story told, I think it's necessary to document these symptoms before attempting to deal at length with other issues. Reliving this was neither unemotional nor easy, especially since I'd long ago learned to make the best of things - until this latest rude and rampant assault.
    • artur737 Worn down by Lym 30.01.06, 21:36
      Worn down by Lyme
      from Columbia Daily Tribune
      Family says disease caused death at 37
      By GREG MILLER of the Tribune’s staff
      Published Saturday, January 21, 2006

      Although Kym Cooper’s autopsy says she died of natural causes, her family believes her death Monday while she was sleeping was a product of Lyme disease, an illness she struggled with for eight years.

      "Anybody is going to wear down," said Adam Boster, Cooper’s brother-in-law. "I don’t think we’re meant to go forever in that stage."

      Cooper lived with the severe pain and fatigue that accompanied the disease she contracted in 1998. She detailed her physical torment and battle with doctors who didn’t understand her sickness in a 2001 letter her mother found three days after her death at age 37.

      "This came from Kym," Susan Cooper said yesterday, showing the letter to a reporter. "There were just so many people who couldn’t understand how a tick made her this sick."

      In the United States, ticks are responsible for more human disease than any other insect, the Missouri Department of Health and Senior Services says. Lyme disease is just one of several illnesses that can result from a tick’s bite.

      The disease is caused by a bacterial agent, Borrelia burgdorferi. Symptoms include fever, severe headache, muscle or joint aches and a red rash around the site of the initial bite.

      Kym Cooper had worked as an activities director for a Fayette nursing home. After she was bitten by a tick in 1998, she just picked it off and kept walking, sister Steffany Boster said. It’s unclear whether the bite occurred on a trail in Boonville or in Columbia.

      "I don’t think she ever gave it any thought," Boster said.

      A few days later, a red rash developed around the bite.

      A Boonville doctor advised Cooper to apply an ointment and forget about it. But she then began to experience extreme fatigue and had trouble walking and speaking.

      "I knew something was really wrong," Cooper wrote in the 2001 letter.

      Cooper’s Boonville doctor then diagnosed the problem as a stress disorder.

      But as Cooper’s health declined, another doctor referred her to Gordon Christensen, a physician and professor at the University of Missouri-Columbia. Nearly a year after the bite occurred, Christensen diagnosed Cooper with Lyme disease - something he’s only diagnosed three times in his career.

      "It’s a real challenge," Christensen said. "We don’t know a lot about this."

      In Missouri, there were 15 cases of Lyme disease reported in 2004, said Karen Yates, the vector-borne diseases program coordinator at the Department of Health and Senior Services.

      "We really have a hard time tracking that," Yates said yesterday. "We suspect that there are other people who do become ill and are not being counted."

      Some cases of Lyme disease are incurable, but there is no diagnostic test to determine the presence of the disease.

      For Christensen to make a strict diagnosis, he had to follow a strict set of questions and symptoms laid out by the federal Centers for Disease Control and Prevention. Making matters even more complicated, Borrelia burgdorferi has never been isolated in a patient from Missouri.

      "By that definition, there’s never been a case of Lyme disease in Missouri," Christensen said.

      To test for Borrelia burgdorferi, a blood sample must be taken to see whether blood reacts to the illness’s genetic material, but other things can cause a reaction.

      "It’s a big mess," Christensen said of efforts to make such a diagnosis.

      Christensen said these unknowns have divided most physicians into one group that doesn’t believe Lyme disease has occurred and treats the symptoms and another group that aggressively treats the disease with antibiotics.

      "I’m kind of right in the middle," Christensen said. "I don’t think either group has got it right."

      Confusion like this drove Cooper to type a one-page letter.

      "If you run into a doctor that says Lyme disease doesn’t exist, it’s time to find another doctor," said Adam Boster, Cooper’s brother-in-law.

      Yates said that of Missouri’s 15 cases of Lyme disease in 2004, three affected residents of Boone County. The state department of health says the incidence of the disease was 2.21 per 100,000 in Boone County, compared with the state average of 0.46 per 100,000.

      No confirmed Lyme disease case has been fatal.

      "It’s a chronic illness, but it’s not considered to be lethal," Christensen said. "It’s the complications."

      The CDC lists several tips to protect against ticks: Avoid tick-infested areas, wear light-colored clothing, use tick repellent and perform daily tick checks.

      If someone finds a tick embedded in his or her skin, the CDC Web site recommends using fine-tipped tweezers to grab the tick close to the skin and gently pull it straight up to keep its head intact with its body. After handling the tick, wash hands, clean the bite and watch for signs of illness.

      As Cooper’s family members mourn, they are preparing for a service at 2 p.m. tomorrow at Memorial Funeral Home. They have asked for donations to the National Lyme Disease Association because they know - through Cooper’s letter - how important Lyme disease education can be.

      "I hope that whoever reads this letter will have better understanding of what it is like to live like this," Cooper wrote. "Please, I need all the support I can get because I am not getting better only worse."
    • artur737 'I wanted to talk about dying' 30.01.06, 21:42
      From: Osseo-maple Grove Press - News; December 28, 2005

      Maple Grove resident continues recovery after mystery disease diagnosed as Lyme

      by Wendy Erlien

      Last February, Maple Grove resident Sue Nelson felt she had hit rock bottom.


      She was in constant pain that worsened daily and had been to every doctor and specialist she thought was possible, incurring above $300,000 in medical expenses.

      "I laid in bed thinking 'this is it'. I couldn't do anything. I couldn't walk, sleep or function in daily life. There were no more doctors. No more tests. I wanted to talk about dying. I thought that is where the pain would lead me," Nelson said.

      After all the doctors and multitude of tests, Nelson was left with no diagnosis and a life of consent pain.

      "I wanted to talk about dying. I wanted to make peace with myself and make preparations. My mom was the first one willing to talk about my wishes and it was like admitting I was going to die," said Nelson. "I prayed I would die quickly or receive an answer as to why I was so sick. During our conversation, out of the blue, my mom mentioned Lyme disease."

      Little would Nelson realize, the conversation about the possible end of her life would lead her to the discovery that would allow her to live her life again.

      Nelson was diagnosed with Lyme and Bartonella disease in March 2005. The diagnosis and treatment, she explained with a smile, is letting her live her life again.

      Although Nelson cannot determine the date she contracted the diseases, she started developing symptoms in August 2004. She did not experience the classic "bulls eye rash" associated with Lyme disease, which may have led to an earlier diagnosis. Symptoms began in the form of the feeling of pins and needles in her feet. "It was unusual, but nothing other than a minor annoyance," said Nelson. "I knew something was wrong, but it wasn't anything I felt I should see a doctor about."

      In November 2004, existing symptoms had worsened, spreading through her body and additional symptoms appeared. Nelson decided it was time to visit a doctor when she could no longer sleep at night due to a resting heartbeat of 90-120 beats per minute. According to the American Heart Association, the average individual has a resting heart rate of 60 to 80 beats per minute. She was placed on high blood pressure medication, but symptoms continued to worsen and new symptoms continued to appear.

      "I started having a consent buzzing feeling in my body," explained Nelson. "Eventually, I had fainting episodes, mini seizures and convulsions."

      In addition to a general practitioner, Nelson visited a stream of specialists ranging from cardiologists to infectious disease specialists and had a multitude of tests performed. Nelson indicated that a test was completed for Lyme disease, but it had provided a false negative.

      During one of her many clinic visits, Nelson was advised her problems stemmed from depression due to her age and circumstances.

      "I was insulted, but I went along with the antidepressants with the hopes it would cure me. Everything continued to get worse," said Nelson. "I was so scared. By the time I had scheduled the multiple appointments and tests, I was numb up my left foot to my ankle. My right foot and right hand were numb along with the right side of my face. The usual sensations I had felt with my hand were gone. If I tried to pet the dog, I couldn't feel anything."

      According to the Lyme Disease Foundation, Lyme disease symptoms can often imitate other diseases and can be misdiagnosed. Some individuals do not notice the early indicators of the disease, such as flu-like feelings of headache, stiff neck, fever, muscle aches, fatigue and a possible rash from the bite. Once early indicators of the infection disappear, the disease can disseminate to other organs. The LDF indicates Lyme disease can adversely affect many portions of the body, such as the brain, eyes, skin, heart, joints, liver, lungs, muscles, digestive system and spleen and can affect pregnancy.

      As time progressed, Nelson made repeated visits to the emergency room. Her ability to walk was gone. She no longer could complete simple, daily functions such as changing her clothes, bathing or brushing her teeth. Husband, Mike, and daughter, Madelyn, assumed the role as her caregiver. Since she is self-employed, she was did not receive disability benefits and was unable to continue working.

      Then Nelson found her answer.

      As she discussed her illness and what appeared to be a fatal outcome with her mother on the cold winter day, her mother mentioned Lyme disease and its symptoms. The discussion lead to research on the Internet and the shocking discovery that a majority of the symptoms Nelson was experiencing were also found in Lyme disease patients.

      "I couldn't find any Lyme disease doctors in Minnesota or Wisconsin to confirm what I felt was wrong with me," explained Nelson. A specialist was located in Missouri and Nelson, accompanied by her husband, set an appointment.

      "At that point, I had to ride in a wheelchair and be carried by Mike. I could barely handle the plane ride due to the pain," said Nelson.

      Once at the Missouri clinic, a Western Blot test was done and sent to the Center for Disease Control lab and a Lyme lab, IgeneX Inc., in Texas. Nelson had been advised that it was the most clinically accepted test available. The test came back positive and Nelson began antibiotic treatment immediately. Her doctor also diagnosed her with Bartonella based on clinical observation, which involved a review of pictures and Nelson's recounting of an episode of being bit by sand flies in March 2004 while vacationing in the Caribbean.

      Nine months after the diagnosis of Lyme and Bartonella, Nelson continues to improve. She has resumed her business and continues to strive toward a complete recovery while dealing with lingering systems such as cold hands and feet, ringing in the ears and tiring more easily.

      Although she is significantly improved, Nelson still requires ongoing medical treatment.

      "I need to take several types of antibiotics to ensure that I totally wipe out all forms of the Lyme bacteria in my system. I also take a lot of supplements aimed at fighting Lyme disease," said Nelson.

      According to Nelson, she also took an antibiotic called Rifampin that was used specifically to treat Bartonella. "How one responds to an antibiotic is also an excellent indicator of which type of diseases one has," said Nelson.

      Along with the ongoing antibiotic treatment, she continues to have a phone consultation with her Lyme doctor every four to six months and yearly visits. She also continues to have regular lab work done at a local clinic, which is faxed to the Missouri physician, to ensure there are no negative side effects from the long-term antibiotic usage.

      Upon looking back, Nelson feels that the diseases have changed her life.

      "Mike, Madelyn and my mom came through for me and they proved to be my saviors. I was also very surprised at other family members and friends who were there for me and so wonderful. I now personally have much more awareness of others around me who have special needs," said Nelson. "I feel less concerned about the day-to-day stuff and know that it will all work out. I try to remember on a daily basis how far I have come and how lucky I am to be walking around and just doing the small stuff."
    • artur737 Lyme Disease. . .A Growing Concern 07.02.06, 06:20
      Lyme Disease. . .A Growing Concern
      by Mary "Kerry" Kineavy R.N.

      At a Senate Hearing on Lyme disease in 1993, Senator Ted Kennedy referred to Lyme disease as the "Silent Epidemic". There are about 17,000 new cases reported yearly in the United States, The Centers for Disease Control (CDC) has acknowledged that Lyme disease is greatly under-reported in this country. The actual number of infected patients may be ten times higher than what has been reported. Other sources indicate numbers may be thirty times higher than what is reported. Lyme disease is now the fastest growing infectious disease in this country next to AIDS and has been reported worldwide.

      In spite of this, patients' experiences indicate that the general public and many health-care professionals remain much in the dark regarding the true nature of this disease, which if left untreated, or is inadequately treated, can render patients wheelchair-bound, cognitively impaired, permanently disabled, paralyzed, brain damaged, blind or deaf. Deaths from Lyme disease have been reported in medical literature.

      Traditionally Lyme disease has been touted as a disease that is difficult to contract and is easily diagnosed and treated. The increasing numbers of patients with Lyme disease in this country and the thousands of patients who have developed chronic, persistent, or advanced cases of Lyme disease, contradict this ideology. Hundreds of patient support groups have been cropping up across the United States. Ongoing support is generally not needed for easily treated infections like strep throat
      • artur737 Re: Lyme Disease. . .A Growing Concern 07.02.06, 06:21
        THE HISTORY OF LYME DISEASE

        Lyme disease has been described in Europe since 1883 and is believed to have been in this country for about one hundred years. A case of Lyme disease occurred in Martha's Vineyard in 1969. However, Lyme disease was put on the map in the United States in 1975 when a cluster of thirty-five children and adults in Old Lyme Connecticut developed what appeared to be rheumatoid arthritis. Since some of the victims lived on the same street, Mrs. Polly Murray and Mrs. Judith Mesch concerned mothers whose children had been affected, contacted the Connecticut State Department of Health to investigate.

        Doctors connected the illness to tick bites. Dr. Allen Steere, a young rheumatologist from Yale University involved in the investigation, named this new form of arthritis related to tick bites, "Lyme arthritis." The name was changed to Lyme disease when doctors realized the infection could affect other systems in the body aside from the joints. Seven years later, a scientist from the National Institutes of Health (NIH), Dr. Willy Burgdorf, discovered the ticks were infected with a corkscrew shaped bacteria known as a spirochete, This bacteria, Borrelia burgdorferi (or Bb for short) is named for its discoverer and is the causative agent of Lyme disease. Antibiotics have been the mainstay of Lyme treatment since.

        MASSACHUSETTS AND LYME DISEASE

        South Boston residents love to visit Cape Cod and the Islands. Some of you own homes in these areas. I know of eight other people from here who have contracted Lyme disease. It's important to know where Lyme disease may be a problem, whenever you travel.

        Lauren McLaughlin, daughter of Kathy and Mark McLaughlin of East 5th Street, was three when she developed Lyme disease two years ago after vacationing on Cape Cod. According to Mrs. McLaughlin, Lauren developed bulls eye, ring-like rashes on her side, hips, and stomach. She was diagnosed with Lyme disease, treated with antibiotics and got better. Early detection and treatment can prevent further complications. "She is fine now," Mrs. McLaughlin said.

        According to Mr. John Coughlan, Director of the Massachusetts Lyme disease Coalition, Cape Cod, Plymouth County, Martha's Vineyard, and Nantucket have the highest rates of Lyme disease in the state, with Nantucket having the highest rate of Lyme disease per capita in the world. Mr. Coughlan said that other areas in Massachusetts considered high risk include Western Massachusetts (from the Quabbin Reservoir on through Springfield), Southeastern Massachusetts (Fall River, New Bedford and Wesport), the North Shore (in Essex County including Salem, Beverly, Ipswich and Gloucester).

        Lyme disease has been identified in every New England state. New York has the highest rates of Lyme disease in the country followed by Connecticut, Pennsylvania, New Jersey, Wisconsin, and Maryland. Massachusetts ranks eighth overall. Lyme disease has been reported in every state except Montana. According to the Lyme Disease Foundation of Hartford’s Lyme disease reporting information, Montana is not accepting reports until it can isolate the Lyme bacterial from two stages of infected ticks.
        • artur737 Re: Lyme Disease. . .A Growing Concern 07.02.06, 06:21
          THE DEER TICK

          In Massachusetts, the ticks responsible for transmitting Lyme disease to humans are the tiny deer tick. These ticks are not born carrying Bb. They acquire it by feeding off infected animals. In the Northeast, the white footed mouse and deer are the main carriers of the Lyme disease bacteria. Other animals such as raccoons, opossums, skunks, and squirrels can also be carriers. Migrating birds appear to play a role in the spread of Lyme disease because they can drop infected ticks over widespread geographical areas.

          Oak trees also play a role in the ecology of Lyme disease because animals that carry the infection and infected ticks may be found hanging around oak trees gathering acorns to eat. Deer tick can also transmit other diseases called ehrlichiosis and babesiosis along with Lyme disease. A person can contract these separately or all three can be transmitted simultaneously from one tick bite.

          The first stage of development in the life cycle of the deer tick is the larvae stage. In this stage the tick will bite an animal that is infected with Bb and become a carrier. In the next stage, the nymph stage, the tick transmits Lyme disease to humans or other animals. Nymphal ticks are no bigger than a pinhead. They are most active in spring and summer. Because of their tiny size many people don't see them on the skin. It is believed nymphal ticks are responsible for many cases of Lyme disease for this reason. The adult tick is most active in fall and is about the size of a poppy seed. Spring through fall is considered tick season, however, be aware that ticks can transmit Lyme disease year round, even in winter when the weather is mild. (40 F)

          Ticks are commonly found in wooded areas, but one doesn't have to be camping, hiking, or hunting deep in the woods to be exposed to deer ticks. Many animals that have been displaced by new construction and changing habitats may wander into other areas in search of food. As a result, ticks can be found around residential property, in shrubbery, leaf litter (dead leaves), tall grass, wood piles, and on stone walls. Lyme disease carrying ticks have been found in Central Park, in the heart of a big city!

          Since ticks need moisture for survival, they tend to stay close to the ground; however, they do crawl upwards. When visiting the seashore in high risk areas, be careful. Infected ticks can be found in tall grass along the beach.

          THE BITE

          Ticks can sense movement, heat, and carbon dioxide. That's how they identify potential victims. All you have to do is brush up against one, and it will latch onto your clothing like Velcro to wool. Once on your clothing, a tick may crawl around for an hour or two before it finds an opening (like up your pant leg or under your shirt). It then burrows under the skin with a jagged structure on its head and releases a glue-like substance to anchor itself.

          Since ticks like moisture, they may attach themselves to areas like the armpits, the groin, behind the knees, under the breasts, or where clothing stops them in their tracks like the underwear line, hatline, or pantline. However, they can be found anywhere on the body.

          Ticks release an anesthetic type agent that numbs the skin when biting so the bite is usually painless. (Can you believe how clever these creatures are?) For this reason, many people don't even know a tick has bitten them. The tick will then feed for a few days until it is engorged with blood. It passes the bacteria onto humans through its saliva.

          Although some doctors believe it takes twenty-four hours for an attached tick to transmit the disease, other doctors believe that Lyme disease can be transmitted in less than twenty-four hours of attachment. (If a person doesn't know he/she has been bitten, it would be quite difficult to know how long a tick was attached). After it is finished feeding, the tick will back off and crawl away. It's important to understand how elusive and tiny deer ticks are. For these reasons, many people don't recall a tick bite and don't know they have been exposed to Lyme disease.

          THE SYMPTOMS

          The symptoms of Lyme disease can vary from person to person. Some patients may have many symptoms. Others may have a few. The following is a general guideline. It is important to know that these symptoms can occur at any stage or simultaneously. Some patients may not develop any symptoms for quite awhile (dormant infection) and may have late stage symptoms as the initial presentation.

          STAGE 1-Early Localized-These symptoms may occur days or weeks after a tick bite. Treatment with antibiotics at this stage is most effective and can prevent further complications.

          RASHES-Within 4 days to many weeks after a bite, patients may develop a rash at the site of the bite. Some doctors say only 30 to 60 percent of patients get the rash or recall seeing a rash. The rash that is considered diagnostic of Lyme disease is called erythema migrans (EM). This rash is also known as a bulls eye rash because of its appearance (like a dartboard). It has a red center, surrounded by a circle of clear skin and another red circle. This rash usually starts out small and expands over a period of days. It can range from dime size to an area that covers the entire back. The rash can persist for several weeks.

          Other Rashes

          Patients and health-care professionals should familiarize themselves with other rashes that may be caused by a tick bite. EMs can have different presentations. Not all rashes are typical bulls eye rashes. Rashes can be oblong or oval. Some are solid red. Others may be pink and scaly. Some itch, others do not. Some may be warm or hot to the touch. Some are raised. Others are flat. Some may be fluid filled (like a blister).These rashes may be mistaken for ringworm, cellulitis, dermatitis, an allergic reaction, or other insect bites.

          It is important to see a doctor for any new rash that develops. A thorough history can help narrow the causes. Be alert to any rashes that develop when spending time in endemic areas for Lyme and in the days, weeks, or months that follow. Be sure to tell your doctor where you have traveled.

          Other Stage 1 early symptoms include: flu-like illness, fever and chills, headaches, swollen lymph nodes, fatigue, cough, muscle aches and pains, and sore throat.

          STAGE 2-Early Disseminated (spreading)-May occur weeks or months after tick bite:

          Brain-Stiff neck (meningitis), severe headaches, facial paralysis (Bell's palsy) blurred vision, ear pain, ringing in the ears (tinnitus), increased sensitivity to sound (hyperacousis): numbness, tingling, burning or painful sensations in the extremities (parasthesias, neuropathy).

          Eyes/Mouth/Other- light sensitivity, seeing floaters, eyelid or facial twitching, burning or heat sensations, stabbing pains, joint stiffness, tendonitis, heel pain (plantar fascitis) difficulty chewing, jaw pain, TMJ, loss of appetite.

          Heart-Chest pain - shortness of breath, dizziness, palpatations, increased or decreased heart rate (slow heart rate may require a temporary pacemaker), murmers, abnormal heart rythmns, congestive heart failure, infection of the heart layers (pericarditis).

          Bones+muscles-myalgias, arthralgias (muscle and bone aches/ pain), migratory musculoskeletal pain - (pain that travels from joint to joint) can affect any joint such as the knees, shoulders, back, hips, neck, ankles, elbows and wrists. This pain may cause limping (watch for this in children).

          Abdomen-liver and spleen enlargement abdominal pain (common in children) nausea and vomiting, irritable bowel, diarrhea, constipation, urinary frequency or bladder irritation.
          • artur737 Re: Lyme Disease. . .A Growing Concern 07.02.06, 06:22
            Other-red itchy eyes, conjuctivitis, skin lesions/rashes beyond the tick bite site weight gain or loss

            STAGE 3-Late-stage /Chronic Lyme-may appear weeks, months or years later:

            Brain-Personality changes, mood swings, depression, anxiety, encephalopathy may occur when Bb infects the brain and cause-memory and cognitive problems, forgetfulness, confusion, speech problems, difficulty recalling the names of common objects, losing train-of-thought mid-sentence, getting lost-going to the wrong places.

            Other-Balance disturbances-can lead to falls decreased muscle strength and tone, muscle weakness, muscle tremors or twitching, hearing loss, sleep disturbances, insomnia, irritability, stoke.

            Bones- arthritis (with or without redness, swelling)

            Other-visual disturbances, blindness, skin changes- scleroderma-like lesions (known as Acrodermatitis chronica atrophicans-more common in Europe

            Other symptoms that have been reported: seizures, increased nightmares, vertigo, sinus problems/infections, menstrual irregularities, breast pain, intolerance to heat or cold, hoarseness and difficulty swallowing, hair loss, unexplained chills or sweats, tooth sensitivity, loss of libido, and testicular/pelvic pain.

            Dr. Sam Donta, who practices at Boston University Medical Center, is a clinical researcher and infectious disease specialist. He serves as the Principal Investigator for Gulf War Syndrome for the United States. Veteran's Administration, and is widely known as a Lyme disease expert. According to Dr. Donta, it's the combination of symptoms, not just a single symptom that is the tip off for Lyme disease.

            He considers the following, the three major symptom categories of Lyme: 1) fatigue, 2) muscle and or joint stiffness or aches, and 3) other neurological symptoms such as memory problems, concentration problems, mood problems and numbness/ tingling. Dr. Donta indicated these are important symptoms to note when evaluating patients suspected of having Lyme disease. "Numbness/tingling is a particularly important one because you just don't get numbness/tingling in different parts of the body for no reason, " he said. "These major three symptoms, which you see in disorders like fibromyalgia, and chronic fatigue, are the tip off for Lyme over a period of time. So it's not just that you have a headache today, could that be Lyme or you have been tired for a week or even a few weeks, could that be Lyme, it's the combination that's the key." Dr. Donta added. He also said palpatations, irritable bowel, bladder irritation or frequency, and eye blurring are also key symptoms. According to Dr. Donta dormant Lyme disease can reactivate after another tick bite, after surgery, after taking an antibiotic for an unrelated reason, or some stressful event.

            AN INFECTION OF THE BRAIN

            Most people know that meningitis and encephalitis are infections of the brain. Bb also infects the brain (called neuroborreliosis) and can have profound effects. According to Dr. Robert Bransfield, a psychiatrist from New Jersey who treats patients with Lyme disease, suicide accounts for a significant number of fatalities associated with Lyme disease. Dr. Bransfield maintains, "We have an illness that's associated with depression. To understand suicide risk, we look at depression. Late-stage neuropsychiatric Lyme disease is associated with impulsiveness and explosive aggression, which can increase suicide risk. Lack of pleasure in life can increase risk. There's a combination of contributors. A lot of people with Lyme disease have a lot of loss, marital discord, disability, demoralization, decreased libido, chronic pain and the additional frustration of dealing with doctors and a society that doesn't understand this disease."

            When asked "What other factors make these patients more vulnerable?," Dr. Bransfield added, "With other illnesses, patients can take a break from the illness. For example, if a patient has gout, he can elevate his foot to help with the pain. Late-stage Lyme disease can give a hundred different symptoms and patients may have a difficult time taking a break. If a patient wants to read, he may have blurred vision. If he wants to take a walk, he may have knee pain. If a patient wants to sleep, he may have a sleep disorder."

            Dr. Bransfield stated that Dr. Paul Fink, past president of the American Psychiatric Association has acknowledged that Lyme disease can contribute to every psychiatric disorder in the Diagnostic Symptoms Manual IV (DSM-IV is used to diagnose psychiatric conditions) including attention deficit disorder (ADD), antisocial personality, panic attacks, anorexia nervosa, autism and Aspergers syndrome (a form of autism) to name a few. According to Dr. Bransfield, the symptoms of neuropsychiatric Lyme disease in children may manifest as a drop in grades, irritability, attention span like disorder, decreased concentration, sleeping a lot, fatigue and increased sensitivity to sound.

            Kay is a 43-year-old mother of two, from Wenham Massachusetts, who has Lyme disease. She understands the affects that Lyme disease can have on children because both of her children have it. Her daughter was nine years old when she was hospitalized in a locked pediatric psychiatric unit after she'd developed visual hallucinations, paranoia, suicidal feelings, severe confusion, partial vision loss and joint pain. She was diagnosed with an anxiety disorder, psychosis, attention deficit hyperactivity disorder, and bipolar illness. Her IQ dropped 45 points in six months. She could no longer add 1+2. Tests revealed decreased blood flow to the brain and brain lesions. She was started on a number of psychiatric medications. After seeing sixteen doctors and missing two years of school, doctor number seventeen diagnosed her with Lyme disease. After two months on antibiotics she had greatly improved. She is 12 years old now and off all psychiatric medications. She is still on antibiotics and an Honor Roll student.

            Her diagnosis led to her brother's and mother's diagnoses. When he was in the sixth grade, he developed depression and rage and missed a half a year of school. He tested positive for Lyme disease. Kay recalled removing many ticks from her children and herself over the years. She too had been plagued by many health problems that started when she was working at the Angell Memorial Animal Shelter in Jamaica Plain, when she was 18. She had developed many rashes, severe fatigue, joint pain, depression, and suicidal feelings. Her symptoms persisted for years. She tested positive for Lyme disease, ehrlichiosis and babesiosis. Her son is still on antibiotics, feeling well, playing sports and is also an Honor Roll student. She is happy to report that after two years on antibiotics, she is 100 percent better, symptom free and has been off medications for three months. "I feel great," she said.

            Dr. Bransfield believes that there is still much the medical community has to learn and the book shouldn't be closed on Lyme disease just yet. "The brain is the most complex organ. We have to have humility that most of medicine is unknown at this point in history. If we have an arrogance and think we know more than we do
            • artur737 Re: Lyme Disease. . .A Growing Concern 07.02.06, 06:23
              THE GREAT IMMITATOR

              Lyme disease obviously produces a number of symptoms. Health-care professionals may have a difficult time distinguishing Lyme disease from other illnesses. Even the blood work that is commonly elevated in rheumatic diseases such as lupus and rheumatoid arthritis, may be elevated in some patients with Lyme disease. This can be very confusing for doctors.

              Some patients with Lyme disease have been told they were suffering from multiple sclerosis (MS), lupus, rheumatoid arthritis, alzheimers disease, amyotrophic lateral sclerosis (ALS-Lou Gehrigs disease), chronic fatigue syndrome, fibromyalgia and a number of other illnesses only to find out that Lyme disease was causing the symptoms.

              Debbie is a former stockbroker from Kentucky who saw 18 doctors over a period of 2 years and was forced to take a medical leave from her job "for an undisclosed" illness in 1996. In 1998, she found out what the illness was. "Doctors number one to seventeen told me I had chronic sinusitus, chronic fatigue immune deficiency syndrome(CFIDS), ALS, MS, lupus, systemic lupus, erythematosus (SLE), bipolar disorder, depression, Cushing's and Addison's disease, and doctor number seventeen said I had a brain tumor. Doctor number eighteen was a neurosurgeon who said I didn't have a brain tumor. He said he was going to run a test. It turned out I had Lyme disease." The neurosurgeon had an R.N. who worked for him in the Carolinas. She contracted Lyme disease and after about four years, she died. He just said I reminded him of his R.N. and a late-stage Lyme victim, " she said.

              Her previous diagnoses were wrong. She said she had many tick bites between 1992 and 1996 before the diagnosis of Lyme disease was made. She was living in a house in the woods at the time, and it wasn’t unusual to find seven or eight ticks on her a day. She’d had many bulls eye rashes but doctors thought these were allergic reactions and treated her with steroids to suppress her immune system. She was unaware at the time that ticks could carry disease and cause illness. "I had a substantial net worth and a successful career and am now disabled from Lyme disease at thirty-seven. I am not what I used to be. I know who that person was but don't recognize her. She was active, professional, a perfectionist, funny, a volunteer, musically gifted, a public speaker and many other things. It’s a second life. I am an advocate for Lyme patients and the disease now," she said. Currently, she is on antibiotics and has shown improvement. "I can walk without a walker now," she said.

              Sue is a 43-year-old mother of six from a Lyme endemic area in New Jersey. She, her husband and four of her six children have Lyme disease. She was bitten by a tick in 1996.The diagnosis of Lyme disease was made two years later when she became confused, was walking into doorways, and got lost in her tiny town that is 1.6 square miles. Shortly after this episode that she described as feeling like she had amnesia she became paralyzed from the neck down for two days. "I didn't even know what year it was," she recalls. She was started on antibiotics and has been on them for two and one half years now. She tested positive for Lyme, babesiosis, and ehrlichiosis. She said every time she tries to go off treatment, her symptoms return. "I am ninety-nine percent better now (on antibiotics). People don't understand that this can be a chronic disease and you have to learn to deal with it for the rest of your life," she said. She said her husband developed a number of symptoms and went from doctor to doctor. He was thought to have MS, lupus and Grave's disease (a thyroid disorder). He also had migraines; mood swings, numbness and limpness in his arms, palpatations, and chest pain. She said before finding out Lyme disease was causing his symptoms, she’d had to call 911 a couple of times because he would become so ill he would turn blue. "Antibiotic treatment saved his life," she said.

              Because of her own experience with symptoms, like paralysis and confusion, she began to talk to neighbors with other health problems wondering if Lyme disease was causing their symptoms too. She became aware that a few people on her street had ALS, a neurological disorder that can lead to paralysis. She encouraged these people to get tested for Lyme disease.

              "They tested positive," she said. She has since encouraged a number of other patients with ALS to get tested for Lyme disease. She said 60 patients have tested positive over the past three years. Although doctors would not consider this information scientific and could dismiss it as coincidental, it is quite compelling.

              Patients with Lyme disease who were diagnosed with other illnesses for months or years before finding out that Lyme was causing their symptoms, will go as far as to say make sure that you don't have Lyme disease if you are suffering from a disease that Lyme disease can mimic. A number of scientific studies have shown a connection between Lyme disease and many other illnesses. There are links to these at the end of this article.

              THE BLOOD TESTS

              There are blood tests available to test for Lyme disease. I am providing this information for those who may be tested for Lyme disease or for health-care professionals who are not familiar with the interpretation of the tests. The most commonly used tests are the ELISA and Western Blot. The Western Blot is the most accurate and has two parts known as the IgM reaction and the IgG reaction. It is important that both portions of this test are done because they each can indicate different aspects of the disease.

              Dr. Donta said," The way I read it is the IgM antibody reaction is compatible with ongoing active disease as well as an indicator of early disease, but you put that together with the clinical course and you can figure out whether it's just happened or it has been going on over the last several months and you need a complete Western Blot not just
              following a couple of guidelines that were set up which unfortunately was inaccurate."

              Aside from reporting the levels of IgM and IgG in the blood, the Western Blot reports specific bands relating to the different proteins present in the bacteria that cause Lyme disease. Picture this test like a blueprint for the bacteria. On the tail, you will find band #41. On its outer coating, you will find band # 23 and #31 and so on. There are 30 different proteins. Some are more specific for Borrelia burgdorferi than others.

              Dr. Donta cautions that the ELISA test for Lyme disease is not as good as it is in screening for other diseases like AIDS. He said doctors should never stop with just the ELISA but should also do the Western Blot to prove the patient has specific reactions. "Unfortunately, we don't have any ability to find the bacteria in terms of culturing like when you have a strep throat, you culture strep or with urinary infections, you can grow the bacteria and test it. So my assumption is these bacteria are not out in the open, they are hiding,' Dr. Donta said. "The only tests that we have right now, are the antibody tests, the serum tests, which are indirect methods asking the question has your body seen, has your immune system seen any of the bacterial proteins (specific for the Lyme bacteria)," he added. Testing is not standardized. Dr. Donta said that testing that has been done from the mid-eighties has shown that one reliable lab could not repeat another reliable lab's results. "I think it's just became a political thing not to do the Western Blot because some of the authorities felt that physicians couldn't interpret it. Well, that’s just very condescending. Physicians can interpret a variety of things if they're taught and this is a very simple thing," he said.

              • artur737 Re: Lyme Disease. . .A Growing Concern 07.02.06, 06:24
                THE DIAGNOSIS

                Because testing can and does miss cases, the CDC firmly states in its literature about Lyme disease that the diagnosis of Lyme disease is a clinical one. It is based on a patient's history and symptoms. It is not a laboratory diagnosis. This point seems to elude many doctors who will test for Lyme disease because of a patient's history and symptoms, then decide because the blood test was negative, there is no evidence of Lyme disease.

                Since it can take several weeks after contracting Lyme disease for the body to produce antibodies that show up on blood tests, testing done at the early phase is usually negative. Antibiotic therapy can also cause a false-negative test result. Health- care professionals should familiarize themselves with the symptoms and how to interpret test results. Testing has its limitations.

                THE TREATMENT

                Lyme disease is treated with antibiotics. Oral or Intravenous (I.V.) antibiotics may be used depending on the symptoms. Certain neurological and cardiac symptoms require I.V. medication. Although the CDC acknowledges that in some cases, repeated or multiple courses of oral or I.V. antibiotics may be required to treat certain patients, a debate exists within the medical community about the best way to treat late stage or chronic Lyme disease.

                Although Lyme disease was discovered nearly three decades ago and antibiotic treatment has been the main treatment for Lyme disease, the antibiotic protocol instituted in the early 1980s has changed very little since. A number of scientific studies have shown that the Bb can survive for many years and is difficult to kill. Thousands of patients, who were not cured with short-term antibiotic treatment, went on to have chronic Lyme disease. The medical community became divided over what the appropriate treatment of late or chronic Lyme disease should be.

                On one side of the debate are doctors who say that all stages of the disease are easily treated and cured with three to six weeks of antibiotics. Many of these doctors who advocate short-term treatment are paid insurance company consultants. Patients see this as a conflict of interest. On the other side of the debate are doctors who have treated thousands of chronically ill Lyme patients and found that when antibiotic treatment was stopped after thirty days, patients’ symptoms returned. These doctors began to treat patients with longer courses and found patients responded well and progression of the disease was halted. Many were cured.

                Dr. Donta says that doctors are pretty much in agreement regarding the treatment of early disease. It’s the treatment of later disease that has caused disagreement. He acknowledges that although what doctors like Dr. Steere have described as the arthritis of Lyme disease with lots of IgG reactions may do well in terms of outcomes, that isn't the majority. "The majority of patients with Lyme disease have a chronic fatiguing, fibromyalgia type of Lyme disease," he added. "There's no good information to say what is the proper duration of treatment. My studies indicate a need for months of antibiotics. The people who say you only treat for two to four weeks, made that up. They did two to four weeks of treatment and said that they didn't get any benefit but they didn't test it any further or if they tested it with one more cycle of treatment of 30 days and didn't get any benefit their conclusion is still not appropriate because they didn't test it longer." Dr. Donta said. He concluded," Other people including myself have tested it for longer and found that longer treatment makes sense. This is not an acute disease at that point. It’s like Tuberculosis or fungal diseases or Leprosy in which you need months to years to go ahead and treat. This is not a new finding."

                Dr. Donta is one of the few doctors in this country who has conducted a long-term study regarding treatment outcomes for chronic Lyme disease. His study spanned a period of eight years and involved close to 300 patients. The results were published in The Journal of Clinical Infectious Diseases in 1997.

                A POLITICAL DISEASE

                This is no "gentleman's disagreement". This debate has become so acrimonious that doctors who disagree with the mainstream belief that Lyme disease is easily treated and cured, have found themselves targeted by State Medical Boards for 'over treating "Lyme disease with long- term antibiotics. A recent NBC Good Morning Show (01/27/01) verified that twenty-three doctors who treat chronically ill Lyme patients have been targeted for investigaton. Other sources have said the number of doctors who have been targeted is forty. According to the NBC report, the majority of these doctors said it was the insurance companies filing complaints, not patients. It appears to these doctors and their chronically ill patients that the real issue is "cost effectiveness" not patients’ health or safety. Managed care companies have targeted these doctors and use their consultants to testify against them.

                One of the doctors under investigation, Dr. Joseph Burrascano of New York, has treated over 7000 patients with Lyme disease. He testified at the Senate Hearing on Lyme disease in 1993. According to his testimony, he expressed his concerns that patients with Lyme disease were being denied antibiotic treatment, even though they could suffer, based on the advice of doctors who were" on the insurance companies payrolls". He openly questioned the ethics and conflicts of interests of such doctors and said he was taking a risk by stating his views publicly. Two weeks later, many of his patients’ files were removed from his office. He has been targeted since. His medical board hearings are ongoing. The fate of many patients hangs in the balance because he has devised an antibiotic treatment regime that addresses chronic Lyme disease that other doctors follow, and he has cared for and cured so many patients himself.

                Patients have been holding protests and hearings with legislators in New York to stop the "blacklisting" of these doctors. The consensus among patients is that if Dr. Burrascano is sanctioned, or has his license suspended or revoked, it will send a chilling message to other physicians who are currently treating chronically ill Lyme patients as to what they can expect in the future. Why is this happening? According to Dr. Burrascano's 1993 testimony, Lyme disease has become "a political disease".
                His patients are standing by him.

                Mary, a 53-year-old mother of six and grandmother of ten from New Jersey, who has been happily married for thirty-five years, had been working as a Registered Nurse for twenty-one years when Lyme disease forced her into early retirement in 1998.

                She said she was bitten by a tick at a petting zoo in 1989. Within three days she developed fever, swollen glands, headache, ear pain and light sensitivity. Within two weeks she developed knee pain and swelling. She was concerned about Lyme disease because she had removed a tick and became ill shortly after. She expressed these concerns to her doctor, one that she had been seeing for twenty years. His response still upsets her to this day. "He said, you nurses are all alike. Lyme disease is a yuppie disease. Everyone’s making a big deal out of it," Mary said. He refused to help her and dismissed her as having the flu. She went months without treatment and continued to develop more symptoms. At one point, the right side of her body was weakened and she developed facial paralysis. She was thought to have MS but then tested positive for Lyme disease. She was treated with a two-week course of antibiotics and sent on her way. Two years after her tick bite, an evaluation showed she had mild to moderate brain damage, a finding that upset her, considering she had been on the Dean's List when she graduated from college.
                • artur737 Re: Lyme Disease. . .A Growing Concern 07.02.06, 06:25
                  Years passed. New symptoms were given other diagnoses' like CFIDS, fibromyalgia, Bannwarth syndrome, tendonitis, severe degenerative bone disease and memory loss. Her health continued to decline. The cause? Inadequately treated Lyme disease. She had seen a doctor for the tick bite that changed the course of her life two weeks after it happened. It was a doctor she saw nine years later who would help her. Her story is all too common. "I could not walk. I could not work," she said. She eventually found her way to Dr. Burrascano. He treated her for three years with oral or I.V. antibiotics." It was the only thing that made me feel better," she said. Her insurance company refused to pay for the treatment even though she got better. How does she feel about her doctor?" He’s a good man. He’s very dedicated to his patients. I feel the truth will win," she said. She added," I think they (doctors who disagree with Dr. Burrascano) are jealous of him. They have clout; they love money and drug companies. They’re dipping into a couple of different pots."


                  Because of the controversy surrounding treatment, doctors aren't running to take on chronically ill Lyme patients. Many want to keep their distance for fear of reprisals if they prescribe long-term antibiotic treatment. Some patients without access to doctors willing to provide such treatment have resorted to going over the border to Mexico to buy antibiotics in bulk to treat themselves. That is how desperate this has become for patients. Young children comprise one of the highest risk groups for Lyme disease and are also being denied antibiotic treatment for chronic Lyme disease for the same reasons as adults. Long-term antibiotics have proven to be safe when taken as directed under the care of qualified doctors.

                  THE GOOD NEWS

                  The Good News is that if diagnosed and treated with antibiotics in it's early stages Lyme disease is almost always curable. Knowing the earliest symptoms and seeing a doctor promptly is key to successful treatment. The Better News is that Lyme disease is preventable. So now that you know what could happen and what you may be up against on many levels, you need to know how to protect yourselves. It doesn't have to happen to you or your loved ones.

                  PREVENTION

                  There is a vaccine available however, the Food and Drug Administration (FDA) recently held hearings in Washington regarding its safety. A large number of vaccine recipients reported developing adverse reactions. Lyme disease patient support groups across the country have expressed concern about its safety. According to Dr. Donta, there have been problems. "The thing that was wrong during the testing and since the drug has been marketed, is that patients who are getting reactions, severe reactions in terms of joint pains, fatigue, numbness, tingling, the same symptoms you see with chronic disease, are being told 'well, this is non-specific, that you can't tell what it's due to'. Well, come on, it’s related to the vaccine," he said. Dr. Donta said these reactions appear to be happening more so in patients who had Lyme disease and knew it or had Lyme disease and didn't know it. How does he know this? "When we examined some of the Lyme Vaccine reactions, people had evidence of reactions to other Lyme proteins besides the vaccine protein indicating that they had been exposed to Lyme disease at some point", Dr. Donta said. He added, "So my recommendations for now, while the vaccine can be effective in terms of preventing Lyme disease, that anybody who has had Lyme disease or symptoms like achiness, should not currently get it...We need a better vaccine."

                  AN OUNCE OF PREVENTION

                  There are a number of ways that you can greatly reduce your risk of contracting Lyme disease.
                  * Be aware that Lyme carrying ticks are lurking when you travel to endemic areas.
                  * Wear long pants whenever possible in high-risk areas. Nylon clothing is best because ticks have a harder time latching on to it. *Wear light colored clothing to make it easier to spot ticks.
                  * Tuck your pants into your socks to create a barrier. You can reinforce this with duct tape for a more secure seal. Tuck your shirt into your pants.
                  * Tuck your hair under a hat.
                  * If you wear shorts, or short sleeved shirts, apply DEET to exposed skin. Do not use more than ten percent solution for children. Please check all labels for proper use because DEET can be toxic to children if used improperly.
                  * You can spray clothing, shoes and socks with Permethrin, which kills ticks on contact. Once again, follow instructions carefully.
                  * When walking in endemic areas, stick to cleared paths. Avoid tall grass, low hanging brush (ticks can fall onto you) and wooded areas. Don’t walk through piles of dead leaves. Don’t sit on the ground, grass or stonewalls.
                  * When outside, check yourself and others for the presence of any crawling ticks on your clothing or skin every two hours. Promptly brush them off.
                  * When you return home, put all your clothes in the dryer on high heat to kill any ticks that may be hitching a ride.
                  * It is important to do a thorough skin check once your clothing is removed. Check for any changes or areas that look like new freckles. Check yourselves and children thoroughly, head to toe, front to back; check through hair and in all creases. Mr. Coughlan of the MLDC, suggests using a hand held magnifying glass to inspect skin because ticks can be so hard to see.
                  * Pets can get Lyme disease too. Make sure you take steps to protect them. Use a tick collar and check for attached ticks on them as well. Brush coat after pets have been outside. Watch for pain or lameness, arthritis, loss of energy, loss of appetite, depression. See Vet if symptoms occur. Antibiotics are used to treat Lyme disease in pets too.

                  IF YOU FIND AN ATTACHED TICK

                  It's important to carefully remove the tick in one piece if possible. Do not touch the tick or squeeze it with your fingers. Do not attempt to burn the tick with matches or smother it with Vaseline. By doing so, you may cause the tick to inject more bacteria.

                  * With a pair of fine point tweezers, carefully grasp the tick as close to its mouthparts as possible. Gently pull back Do not squeeze or crush the body of the tick when removing it. If a piece breaks off, remove the remaining part.
                  * Place the tick in a clean, sealed container to save it for testing. See the link below for information on where to send it.
                  * Wash the bite area with soap and water. Then apply an antiseptic to the site.
                  * Wash your hands thoroughly.
                  You can send the tick for testing to see if it is infected with Bb. It takes about two weeks for results. Different doctors have different philosophies on how to manage tick bites from high-risk areas. You should call your doctor and let him/her know that you have been bitten by a tick and report results of tick testing. Some doctors recommend prophylactic (preventative) antibiotic treatment for certain individuals who are bitten by ticks. These "high risk 'individuals are those who remove an engorged deer tick that is from known Lyme endemic area, and those who are pregnant or immunocompromised from other illness. The treatment is given to prevent the bacteria from establishing itself in the body. Other doctors think patients should "wait and see" what happens. Check with your doctor if you are bitten. Be alert to any flu symptoms or rashes that follow a tick bite. Report these symptoms promptly and get on antibiotic treatment without delay.

                  FOR PROPERTY

                  * Remove all wood piles, dead leaves and bird feeders from property
                  * Keep lawn mowed
                  * There are pesticides called aracicides available that can be used on property to kill ticks. Consult a professional for this because these products may be harmful if applied improperly.
                  Lyme disease can be prevented. Being aware of tick habitats and how to prevent bites can spare you and your loved ones a lot of pain and s
    • artur737 Re: "Sezon na kleszcza" 20.02.06, 15:43
      My Lyme Story as of August 2004
      Kate D., Halifax NS
      Most Canadian doctors are not familiar with Lyme disease and have not been trained to recognize it. The simple but cruel lesson I learned is that if doctors don’t look for something, they won’t find it.

      I have had a very difficult time obtaining a diagnosis and treatment. Due to my own persistence and financial investment, after eight agonizing years I finally identified my health problem. Over 20 doctors in Ontario and Nova Scotia failed to diagnose my Lyme disease.

      My pain became unbearable and I have had to take painkillers constantly for the last two years. In an effort to avoid addicting narcotics, I had one of my doctors arrange to obtain Ultram (tramadol hydrochloride) from the US. In my opinion, Health Canada should try to bring this drug to Canada because it might alleviate some of the drug problems and crime caused by narcotics. Ultram works for me, whereas drugs such as Tylenol 3 (with codeine) and even Vicodin do not touch my pain.

      Before my Lyme diagnosis, I tried Dr. St. Amand’s Guaifenesin protocol for Fibromyalgia. It did not help me, but resulted in my reading the experiences of many chronically ill people on the internet. I learned a lot. In recent years, many good medical articles and studies have also been added to the internet. My study of these materials was what eventually led to proper testing and a Lyme diagnosis.

      I actually knew enough to ask for a Lyme disease test when I first became critically ill. The results were negative. The test was an ELISA test, the official first screen for Lyme. A few years later I had another negative ELISA test. Finally, years later, I found out that the ELISA is not a reliable test for Lyme, especially late chronic Lyme. My recent test panel included, from the same test tube of plasma: negative ELISA, negative C6 Peptide ELISA, positive Western Blot. The ELISA test for Lyme should not be used, and especially not as a first screen. Current policy is that people don't receive the more accurate Western Blot tests unless they have a positive ELISA result. Professor of Medicine and Director of the Lyme Disease Unit at Boston University Medical Center, Sam T. Donta writes that “over 75% of patients with chronic Lyme Disease are negative by ELISA, while positive by Western blot” (*see explanation from Donta 2002 below). The policy of relying on the ELISA as a first screen test must be changed because it is ruining people's lives.

      I received positive results for the Western Blot test, having had to send my blood to IGeneX Lab in California and pay for the tests myself. A doctor at the Environmental Health Centre in Fall River, Nova Scotia was at least willing to sign for them, even though he thought it was unlikely I had the disease. My results are positive even by strict CDC criteria (US Centre for Disease Control) and IGeneX lab is one of the leading labs in the world in the field of Lyme disease detection.

      Our health system cannot be saving any money by using the less reliable ELISA test. I went to the doctor at least once a month for eight years due to wide-ranging symptoms, none of which were successfully resolved because no one addressed their cause. I have had repeated, extensive testing for rheumatic diseases. If I had been tested with the Western Blot test to begin with, we would have known immediately what was wrong and could have begun appropriate antibiotic treatment, saving a lot of unnecessary use of the health system. Not to mention the fact that I have been unable to work much in recent years and may end up reliant on the welfare system in my old age unless I can recover sufficiently from late-stage Lyme and work hard enough to make up for years of lost income (Lyme is harder to treat successfully the longer it persists). My family has also suffered from this disease. Having a mother who sometimes can’t get out of bed in the morning is hard on children.

      Mainly I have joint, muscle, and connective tissue pain, but I have also had many other strange symptoms body-wide. At one point I received a diagnosis of IBS. Luckily I do not have many neurological symptoms, although in recent years I have had problems with disturbed sleep and even some short-term word recall.

      I do not remember being bitten by a tick, although I grew up in Massachusetts, where Lyme is endemic, and I frequently visit my parents there. I also could have contracted the disease in Indiana or in Southern Ontario. I have not ever had the classic bulls-eye rash either. It is important that doctors be informed that patients without these hallmarks may still have Lyme disease. Dr. Sam Donta states1 “the rash occurs in fewer than 50% of patients with Lyme Disease, but the true incidence of Lyme Disease in the absence of a rash is unknown.” Furthermore, Donta points out that on a clinical basis, ‘chronic fatigue syndrome’ or ‘fibromyalgia’ cannot be readily distinguished from chronic Lyme Disease. Indeed, accumulating experience suggests that Lyme Disease may be a frequent cause of fibromyalgia or chronic fatigue.”

      Unfortunately, doctors tend to assume that patients with multiple body-wide symptoms along with pain and/or fatigue have one of these “waste-basket-label” syndromes that they believe little can be done for. A common belief seems to be that patients with unidentified chronic pain have an oversensitive nervous system. My own frustrated doctors tried prescribing antidepressants and sending me to a psychiatrist, to no avail. I was found to be normal. Indeed, I had normal results for every test the doctors thought to try. For lack of proper guidance from the health care system, many cases of chronic infectious disease such as Lyme are being missed. Now that I know I have Lyme disease, we have found several tests for which I do have abnormal results.

      One of these indicators is the D ratio. A California researcher, Dr. Trevor Marshall found that the ratio of 1,25 D to 25 D in one’s system is a good measure of Th1-type inflammation. This applies to many types of bacterial/immune diseases such as Rheumatoid Arthritis, Osteomyelitis, and at least some cases of Chronic Fatigue Syndrome, as well as Lyme. Dr. Marshall’s treatment protocol was first tested on Sarcoidosis patients, and has proven to be very effective. The protocol uses an ARB, Benicar, to blockade the cytokine cascade responsible for inflammation. This allows the patient's own immune system to work properly again, and also potentiates the low-dose intermittent antibiotics used (mostly minocycline and zithromax).

      My own 1,25 D value came back higher than the maximum Merck value for a healthy individual, and is higher than the value at which bone resorption starts occurring. This explains why my dentist was starting to see early bone loss in my jaw, and a bone density scan came out low normal. My D ratio, is very high. I started the Marshall Protocol in July 2004, and I am documenting my progress on line at www.marshallprotocol.com.

      As for the possible coinfections of Lyme (other infections carried by ticks), I am counting on any such also being addressed by the Marshall Protocol. The one possible exception might be Babesia. Based on my thorough research, one of my doctors and I decided that we should test my blood for Babesia because it is a parasite and the one coinfection of Lyme that cannot be treated successfully by the same antibiotics as Lyme. Many Lyme specialists believe that it is necessary to clear Babesia from the system before Lyme can be successfully treated. While, I do not have overt symptoms of Babesia, it is possible to have a subclinical case. Experts disagree and it varies according to region, but a conservative estimate is that 20% of Lyme patients also have Babesia. My doctor wrote
      • artur737 Re: "Sezon na kleszcza" 20.02.06, 15:48
        a script for a Babesia test, specifying that the blood be sent to IGeneX lab in California, as my Lyme test was. I would pay for the test itself. I had the blood taken at the QEII hospital in Halifax, but then an infectious disease specialist there overrode our carefully-thought-out action, plucked my blood out of the system and threw it away. So I have no Babesia result.

        It worries me that access to accurate testing through our health system is being limited. I also need to get my son tested for Lyme, as there is a good possibility that he was born with it. He has had many neurological symptoms and some physical symptoms that could be explained by Lyme. But in a study by T. Gardner, in Infectious Diseases of the Fetus and Newborn Infant, 72% of newborns with tissue-verified Lyme disease did not produce enough antibodies to be seropositive for Lyme. So instead of a Western Blot, I am first trying to arrange a Lyme Dot Blot Assay (of the urine) for him, an antigen test only done by IGeneX.

        I will update this report when I am further on the road to recovery, and when I have more news about my son’s results.

        - Kate D.
    • mark_bb Re: "Sezon na kleszcza" 23.02.06, 00:20
      Chcąc dowiedzieć się Wszystkiego o chorobach zakaźnych od Wybitnych
      Secjalistów (tak brzmiała reklama) kupiłem "Dziennik Zachodni" ze specjalnym
      Dodatkiem nr 36 z dnia 11-12 lutego 2006. Ta popularna w najgęściej
      zaludnionym obszarze kraju gazeta ma niewątpliwie pewien wpływ na
      kształtowanie "świadomości społecznej" na różne tematy. A jak udało się to w
      temacie boreliozy ?
      Oto fragmenty:

      (... na wstępie wyliczanka: )
      Współcześnie występujące choroby zakaźne:
      - Malaria
      - Wirusowe zapalenia wątroby
      - Grypa
      - HIV / AIDS
      - Opryszczka, ospa wietrzna / półpasiec
      ( koniec wyliczanki. )

      Hurra ! nie tylko nie ma żadnej boreliozy, ale nawet swojski syfilis należy
      już widać do przeszłości !

      (...)
      Rośliny i zwierzęta mogą mieć również choroby zakaźne. Czy te same co ludzie ?
      - Na szczęście nie. Istnieje pewna swoistość gatunkowa. Jesteśmy odporni na
      większość chorób które dotyczą zwierząt czy roślin i nie zarażamy się, pomimo
      kontaktu z tymi samymi drobnoustrojami.
      (...)
      Aby objawy chorobowe wystąpiły, czynnik chorobotwórczy musi się spotkać z
      niewłaściwym mechanizmem obronnym.
      Musi się cechować zaraźliwością, czyli mieć możliwość przeniesienia się na
      kolejną osobę z osoby chorej lub tzw. rezerwuaru.
      Takim rezerwuarem może być np. kleszcz w przypadku boreliozy.
      (...)

      Hmm. A od kogo zaraża się kleszcz? Od innego kleszcza ? Ciekawe jak oni to
      robią.

      (...)
      Dwa lata temu zaraziłam się boreliozą od kleszcza. Miałam rumień wędrujący i
      przez miesiąc czasu brałam antybiotyk.
      Czy ta choroba może się powtórzyć ?
      - Jeżeli to zakażenie jest wychwycone na wczesnym etapie i podjęte jest
      leczenie antybiotykami, to choroba ta na ogół mija bez następstw.
      (...)

      I to już Wszystko na ten temat - ale przecież tego tematu NA OGÓŁ PRAWIE nie
      ma...

      Szary Kowalski dowiedział się od Specjalistów PRAWIE wszystkiego o chorobach
      zakaźnych. I tak mu pewnie zostanie.
      No cóż, PRAWIE robi wielką różnicę.
    • artur737 Chronic Lyme disease debate 27.02.06, 20:04
      February 19, 2006
      Chronic Lyme disease debate: Common ailment or false hope?


      By BILL RADFORD - THE GAZETTE (Canada, BC)

      Like the flu, it hit hard and fast.

      But Dr. David Martz knew whatever he had was worse than the flu.

      “My whole body hurt, and I could hardly get out of bed and I could hardly walk,” he said. “I knew something real serious was wrong.”

      He fell ill in April 2003. He was hospitalized for two weeks and underwent, he said, “every test known to man.” Weeks and months went by as his condition deteriorated, and the search for answers continued.

      The answer, when it came, was frightening: ALS, also known as Lou Gehrig’s disease, a progressive neurological disease that attacks nerve cells responsible for controlling voluntary muscles. You’ll probably be in a wheelchair in six months, Martz was told, and dead


      in two years.

      A newspaper clipping sent to him by a family friend gave him a possible alternative diagnosis: chronic Lyme disease. And it put him in the middle of what is being called the Lyme Wars, a debate over the true threat posed by Lyme disease.

      Lyme disease is a tick-borne infection most prevalent in the northeastern United States. Mainstream medicine regards it as generally simple to recognize and easy to treat with a few weeks of antibiotics. But some doctors view Lyme disease as something more common and more insidious, often hiding in the body and manifesting as a chronic infection requiring months or years of intensive antibiotic treatment.

      They regard Lyme disease as a “great impostor,” accounting for some cases of chronic fatigue syndrome, fibromyalgia, Gulf War syndrome and other illnesses with often vague and confusing symptoms.

      Martz, who has largely recovered after long-term antibiotic therapy, is a believer — so much so that the Colorado Springs doctor started a practice focused on chronic Lyme disease. A past president of the Colorado Medical Society and the El Paso County Medical Society, the 65-year-old Martz now finds himself on medicine’s fringes.

      The debate boils down to hope. Are patients diagnosed with chronic Lyme disease being given false hope and wasting money on years of treatment? Or are doctors who don’t believe in the condition denying ill and often desperate patients hope when there could be some?

      “Rather than close the mind, where’s the harm in saying maybe there’s another dimension to it?” Martz said. “Let’s think out of the box, as the saying goes, and stay open to the possibility that maybe this is more complicated than we realized.”

      DECLINE AND RECOVERY

      Martz grew up in smalltown Illinois and moved with his family to Las Animas, in the Arkansas Valley, in 1956. His father, a Baptist minister, wanted him to follow in his footsteps. But Martz, seeking to combine his scientific interests with a humanitarian bent, chose medicine as a career.

      A 1965 graduate of the University of Colorado Medical School in Denver, he moved to Colorado Springs in 1970 and over the decades practiced internal medicine, oncology and hematology. He was a hospice medical director and part-time hospitalist when he fell ill.

      The initial diagnosis was a motor-neuron disease of unknown cause, possibly ALS. Lyme disease was considered, but blood samples sent to the Mayo Clinic were negative for Borrelia burgdorferi, the corkscrew-shaped bacterium that causes Lyme. One doctor put him on a month of antibiotics as a treatment for Lyme anyway, but it didn’t help.

      His legs became weaker, and symptoms spread to his hands and shoulders.

      “He fairly quickly was unable to rise from a chair by himself or fully dress himself,” said Martz’s wife, Dee.

      He met all the clinical criteria for amyotrophic lateral sclerosis, or ALS. It’s a disease that’s difficult to diagnose in the early stages. There is no one test or procedure to establish the diagnosis. And there is no cure.

      Dee Martz, a licensed professional counselor, had lost her previous husband to a fast-moving cancer. This would be slower. David Martz’s muscles would waste away, but his mind would stay clear, trapped in an increasingly paralyzed body.

      “The reality of what life would look like with ALS was very stark,” Dee Martz said.

      The newspaper article David Martz received offered a sliver of hope. It quoted a Lyme specialist saying the usual tests are inaccurate; more sensitive testing is required.

      So Martz turned to a laboratory known for that specialized testing, IGeneX Inc., in Palo Alto, Calif. A conventional antibody test came back negative. But IGeneX also did a urine test, using a method questioned by federal health agencies in a warning last year against testing that hasn’t been validated. It was positive.

      Martz became a patient of Dr. William Harvey, a Lyme specialist in Texas. He began intravenous antibiotic therapy in January 2004.

      By then, Martz said, he was “basically homebound.”

      “I could walk maybe a hundred yards. I could stand only five minutes, at which point I would begin to shake and had to sit down.”
      • artur737 Re: Chronic Lyme disease debate cz II 27.02.06, 20:05
        His stamina improved within a month of beginning treatment. In three months, he could stand unassisted for longer periods, and do deep knee bends. In six months, he was much as he is now, his strength and energy about 75 percent of what it was before he fell ill.

        With his rapid progress, he became Harvey’s star patient.

        “Nobody I know of has gotten that much better that fast,” Martz said.

        TREATING OTHERS

        Martz retired when he became ill. In January 2005, feel-ing better and wanting to help others, Martz opened a new practice, Rocky Mountain Chronic Disease Specialists.

        His stamina still isn’t what it was, Dee Martz said, and she worries he could be endangering his health by continuing to push himself.

        “But he feels so strongly that his gift of life is something he wants to pass on to others,” she said.

        Martz has seen about 350 patients in the first year: roughly 70 with neurological, ALSlike illnesses, the rest with problems such as fibromyalgia or chronic fatigue syndrome. And all are seeking answers.

        “The average person has seen 24 previous doctors, and they’ve been told that they have maybe lupus, but it doesn’t fit, maybe MS, but it doesn’t fit, maybe psychiatric problems,” he said.

        About 80 percent test positive for the Lyme bacterium using IGeneX testing and are given the option of long-term antibiotic therapy, Martz said. Those who test negative but still fit “the classical clinical picture” also are offered the therapy, and many improve, Martz said.

        “That just shows that the testing is not adequate yet.”

        The therapy is not a cureall, Martz stressed. And, at $2,000 to $3,000 a month, it isn’t likely to be covered by insurance, because insurance companies don’t commonly recognize chronic Lyme disease.

        “You need to go into it understanding that it may not have any benefit at all,” Martz said. “But if you wish to try it, we’re willing to help you.”

        Don and Peggy Brown of Yuma, in northeastern Colorado, regard Martz as their daughter’s saviour.

        Sabrina Brown, 18, began having problems four years ago. It began with upper-back pain, but other symptoms began to pile on: acid reflux, blinding headaches, fatigue and cognitive problems, such as confusing colors.

        Don Brown said they went to about 80 health care practitioners — doctors, chiropractors, acupuncturists, “you name it.”

        Ultimately, the answer they got was, “She’s female, she’s a teenager, her hormones were raging and she was crazy.”

        Peggy Brown, through Internet research, zeroed in on chronic Lyme disease as a possible explanation. Initial testing was negative. But it all fit, the Browns thought.

        Then they found Martz.

        “That’s when the ball started rolling,” Don Brown said. Blood samples sent to IGeneX tested positive for Lyme, a diagnosis Martz agreed with when reviewing Sabrina’s long list of ailments. Last spring, he started her on intravenous antibiotics.

        Today, with her treatment continuing, she is thinking more clearly and her pain is reduced.

        “Just everything is better,” she said.

        DISPUTED DIAGNOSIS

        The Browns are believers, but in medical circles, the debate rages on.

        Those sticking to conventional wisdom acknowledge untreated Lyme disease can lead to a host of ailments, and a small percentage of patients with acute Lyme disease continue to have problems after standard antibiotic therapy.

        There is some evidence those problems are not caused by a continuing infection, but by an autoimmune response, in which a person’s immune system continues to respond even after the infection is gone.

        There is no evidence, they say, that long-term antibiotic therapy helps.

        “That idea, I believe, has been to a large extent discredited,” said Dr. Justin Radolf, a professor of medicine at the University of Connecticut Health Center and an authority on the Lyme bacterium.

        Some doctors treating chronic Lyme disease may be exploiting patients, Radolf said. Others may be swayed by patients who push for a diagnosis of Lyme over one involving no treatment and little hope.

        “People grasp at straws,” he said, “and Lyme disease is one they like.”

        That’s not to say there are no cases of persistent Lyme infections. However, Radolf said, “We don’t believe most people have it who are getting that diagnosis.”

        But Dr. Raphael Stricker, a San Francisco hematologist and a leading voice in the other camp, regards chronic Lyme disease as a growing public-health issue. Stricker is president of the International Lyme and Associated Diseases Society, which maintains Lyme disease is prevalent across the United States. Among his patients are best-selling author Amy Tan (“The Joy Luck Club”wink, who has written about her battle with chronic Lyme disease.

        The Lyme debate is politically driven on the government’s side, Stricker believes. Some people in the infectious-disease community, he said, maintain that acute Lyme disease is easily treatable and chronic Lyme is rare or nonexistent. “And they don’t want to admit that they’re wrong.”

        Despite the gulf separating the sides, Martz shies from calling it a controversy, preferring to say it’s a complex issue awaiting answers.

        “Unresolved is a very good word to describe this.”

        NUMBER OF CASES

        21,273 cases of Lyme disease were reported by 44 states and the District of Columbia in 2003. States with the highest incidence of Lyme included Rhode Island, Pennsylvania, Connecticut and New Jersey. Colorado reported one case in 2002 and none in 2003.

        TO LEARN MORE

        - Rocky Mountain Chronic Disease Specialists, Dr. David Martz, 3010 N. Circle Drive, Suite 110. Phone: 264-1500.

        - American Lyme Disease Foundation, www.aldf.com.

        - “Learn About Lyme Disease,” Centers for Disease Control and Prevention, www.cdc. gov/ncidod/dvbid/lyme.

        - International Lyme and Associated Diseases Society, www. ilads.org. Phone: 1-301-263-1080
    • artur737 Easily cured or insidious chronic infection? 13.03.06, 19:58
      Mar. 13, 2006 Philadelphia Inquier

      Lyme disease: Easily cured or insidious chronic infection?
      Some say it's behind other ailments with confusing symptoms.
      By Bill Radford
      THE GAZETTE

      COLORADO SPRINGS, Colo. - Like the flu, it hit hard and fast. David Martz could hardly get out of bed. "I knew something real serious was wrong."

      Martz, a doctor, fell ill in April 2003. He was hospitalized for two weeks and underwent "every test known to man." He got worse, but weeks and months went by before he was told the bad news.

      He had ALS, also known as Lou Gehrig's disease, a progressive neurological disorder that attacks nerve cells controlling voluntary muscles. You'll probably be in a wheelchair in six months, Martz was told, and dead in two years.

      A newspaper clipping sent by a family friend gave Martz a possible alternative diagnosis: chronic Lyme disease. And it put him in the middle of what is being called the Lyme Wars, a debate over the true threat posed by Lyme disease.

      Lyme disease is a tick-borne infection most prevalent in the northeastern United States. Mainstream medicine regards it as generally simple to recognize and easy to treat with a few weeks of antibiotics. But some doctors view Lyme disease as something more common and more insidious, often hiding in the body and being manifested as a chronic infection requiring months or years of intensive antibiotic treatment.

      They regard Lyme disease as a "great impostor," accounting for some cases of chronic fatigue syndrome, fibromyalgia, Gulf War syndrome and other illnesses with often vague and confusing symptoms.

      Martz, who has largely recovered after long-term antibiotic therapy, is a believer - so much so that he started a practice focused on chronic Lyme disease. A past president of the Colorado Medical Society, Martz, 65, now finds himself on medicine's fringes.

      The debate boils down to hope. Are patients diagnosed with chronic Lyme disease being given false hope and wasting money on years of treatment? Or are doctors who don't believe in the condition denying desperate patients hope when there could be some?

      "Rather than close the mind, where's the harm in saying maybe there's another dimension to it?" Martz said. "Let's think out of the box, as the saying goes, and stay open to the possibility that maybe this is more complicated than we realized."

      Martz has seen about 350 patients in the first year: roughly 70 with neurological, ALS-like illnesses, the rest with problems such as fibromyalgia or chronic fatigue syndrome.

      "The average person has seen 24 previous doctors, and they've been told that they have maybe lupus, but it doesn't fit, maybe MS, but it doesn't fit, maybe psychiatric problems," he said.

      About 80 percent test positive for the Lyme bacterium using IGeneX testing and are given the option of long-term antibiotic therapy, Martz said. Those who test negative but still fit "the classical clinical picture" also are offered the therapy, and many improve, Martz said.

      "That just shows that the testing is not adequate yet."

      The therapy is not a cure-all, Martz stressed. And, at $2,000 to $3,000 a month, it isn't likely to be covered by insurance, because insurance companies don't commonly recognize chronic Lyme disease.

      "You need to go into it understanding that it may not have any benefit at all," Martz said. "But if you wish to try it, we're willing to help you."

      Number of Cases

      In 2003, 21,273 cases of Lyme disease were reported by 44 states and the District of Columbia. States with the highest incidence of Lyme included Rhode Island, Pennsylvania, Connecticut and New Jersey.
    • artur737 Lyme is a brain disease (neuroborreliosis) 26.03.06, 03:05
      Lyme is a brain disease (neuroborreliosis)

      By Virginia T. Sherr 7-31-05

      Lyme borreliosis is a brain disease as well as a multisystemic disease caused by spirochetal bacteria.* Quite frankly, it is an infection that has been burdened with a thousand inaccurate medical diagnoses. The manner in which the current pandemic of tertiary Lyme disease, neuroborreliosis, has usually been handled-
      • iiana1 kleszcze w Austrii 28.03.06, 16:02
        Informacja dla spoleczenstwa: weszlam do przychodni do lekarza ogolnego w
        Austrii. Wisi ogromy plakat informujacy o zakazeniach przenoszonych przez
        kleszcze. W tym duzo o boreliozie, jak ja rozpoznac, co robic gdy nie wystapi
        od razu rumien etc. Informacja jak wazne jest szbkie podjecie leczenia. Na
        stoliku w poczeklani swiezo wydrukowane na ten rok (co roku nowe druki) ulotki
        z mapa Austrii,gdzie zaznaczone sa tereny skazone kleszczami i gdzie notuje
        sie najwieksza liczbe wczesnych zakazen borelioza. Znajomi zaznajamiaja mnie z
        kolejnymi informacjami dla Austriakow : przed kazda sciezka wiodaca do lasu
        stoi tablica informacyjna.A na niej: jak ochronic sie przed kleszczem, jak
        spawdzac cialo po powrocie ze spaceru w lesie,ZGLOSIC SIE DO LEKARZA gdy sie
        znajdzie kleszcza. Nie lekcewazyc zadnych symptomow wskazujacych na mozliwe
        ugryzienie. Podjechalam do podwiedenskiego lasku, rzeczywiscie , tablica stoi.
        Ciekawe.smile Podobno maja w Austrii nikly odsetek ludzi z objawami przewleklej
        boreliozy. Jak oni to robia???

        ps.w ramach leczenia borelii zaproponowano mi na poczatek kilka tygodni(?)
        Ceftriaxonu (Rocephin) dozylnie 2/dzien, pozniej , jak uslyszalam, przejda na
        inne antybiotyki w zaleznosci od tego ,na co pozwoli im moj stan zdrowia.(?)
        Brzmi enigmatycznie znajomo ( klinika w Bialymstoku etc) ale zobaczymy.
    • artur737 Wywiad z Dr.Shardtem 31.03.06, 23:30
      A New Approach to Chronic Lyme Disease
      ImmuneSupport.com

      05-11-2005

      By Jill Neimark

      In May of this year I sat down at the beautiful Essex House on Central Park South, with a German physician specializing in internal medicine, Fritz schardt. Dr. schardt, who is associated with the University of Wurzburg in Germany, published an interesting pilot study in the European Journal of Medical Research in July of 2004 on the use of an antifungal drug, fluconazole, in treating chronic, advanced lyme disease. This pilot study examined 11 patients with chronic lyme. Dr. schardt has slowly refined the protocol since then, and believes it holds great promise in treating this difficult condition—which is often misdiagnosed as chronic fatigue or fibromyalgia. Here follows our interview:

      Jill Neimark (JN): What made you think of using diflucan, an antifungal, to treat lyme disease?

      Dr. Fritz schardt (FS): I was actually my first patient. I got lyme disease in 1989, and was given two weeks of doxycycline. Our country follows the protocols set by yours, so that’s what is generally recommended. I now know that was very inadequate and I do not think doxycycline should be used in early lyme disease at all. It is only bacteriostatic, meaning it inhibits the bacteria but does not kill them.

      JN: I know, the same thing happened to me. At the doses they recommend, it also does not penetrate the central nervous system. I had a fever, stiff neck and bullseye rash. The stiff neck means it was already in my nervous system. Therefore I probably needed six to eight weeks of doxycycline at double the dose I was given. Higher doses will penetrate the CNS.

      FS: Right. I recommend penicillin in early lyme disease.

      JN: Amoxicillin is given here. Is that what you recommend?

      FS: No, that’s broad spectrum, so you end up killing many bacteria, including necessary ones in your gut. I recommend smaller spectrum penicillins. The syphilis spirochete has not become resistant to penicillin, and there’s good evidence that borrelia, the lyme spirochete, has not either. In Germany, we have cefalosporine, roxithromycin, cotrim-TMPO, and clarithromycin. These are all good choices. They should still be taken for 20-30 days.

      JN: Okay, well, you took doxycycline so you ended up with chronic lyme disease. What happened then?

      FS: I was sick for 18 months. I was given intravenous rocephin several times. I would feel better, but then once I stopped taking the antibiotics, I relapsed. I was often bedridden and I thought I was ready for the wheelchair. Then, I developed a fungal infection, possibly because of all the antibiotics. So I was put on diflucan. This was around 1990. It was a new drug that was being used mainly for opportunistic fungal infections in AIDS patients.

      JN: And what happened?

      FS: I got better. But I only stayed on it for two weeks at first, and then I got worse again. So I went back on it for 30 days, and I got well.

      JN: What was the dose?

      FS: I took 100 milligrams twice a day.

      JN: Are you completely well?

      FS: I am very active and energetic and I feel quite well. I have since competed in athletic events and won them. However, I do have an occasional heart arrhythmia that I believe may be due to permanent damage from the spirochete.

      JN: Tell me your reasoning as to why diflucan might work in chronic lyme.

      FS: There are several reasons. First of all, it inhibits an enzyme called cytochrome P450. This is an enzyme that your liver, for instance, uses to detoxify chemicals and drugs. Borrelia has a very primitive p450 defense, so if you inhibit it, it is easily weakened. Therefore I believe that diflucan inhibits the growth and replication of borrelia. It does not necessarily kill it. In addition, it penetrates well into the cells and into the nervous system and brain, where borrelia may hide.

      JN: What is your current protocol?

      FS: I recommend 200 milligrams a day, for 50 days. There are now 200 milligram pills available, so once a day is fine. Then I recommend 20-30 days of any of the penicillins I mentioned. You may have to go through several cycles of this protocol. You must also be very aware of other drugs that act on the p450 enzyme system, specifically a subset that inhibits CYP3A4. You should not be taking any of these drugs at the same time as you take diflucan.
      • artur737 Re: Wywiad z Dr.Shardtem 31.03.06, 23:31


        JN: What are some of these drugs?

        FS: There are many, and it’s best to check with your doctor. Some common ones are erythromycin, amitryptylin, midazolam, Lovastatin, and others.

        JN: I hate antibiotics. Do you have to take the penicillin?

        FS: I understand, many lyme patients come to hate antibiotics because they have to take so many of them for so many years and are still ill. In fact, I also was made ill by the antibiotics.

        JN: They really disrupt your digestion.

        FS: Right, that was my problem.

        JN: So, this protocol is your best one-two punch against borrelia, but you don’t have to take the antibiotics if you truly hate them.

        FS: Right. In addition, diflucan has a slow half-life so it can slowly build up in your bloodstream. Sometimes patients call me after a few weeks and say they are feeling very ill on the protocol. Perhaps it’s a herxheimer, or perhaps it’s that the levels of diflucan are higher than they can tolerate. So I say, take a 3 or 4 day pause, and then go back on the protocol. This is perfectly acceptable.

        JN: What happens if you have a weak p450 system? Have any of your patients have raised liver enzymes from the diflucan?

        FS: I have been lucky, not one of my patients have had raised enzymes. It is generally well tolerated. If it is a problem, however, you can lower the dose of diflucan. This would be overseen by your doctor. I recommend 100 milligrams in pediatric cases.

        JN: How many patients have you treated now?

        FS: At least eighty.

        JN: What is the most difficult case you’ve had?

        FS: I have one 75-year-old patient who has had lyme for 18 years. He was very ill. He has had to do this cycle of diflucan and penicillin 3 times. He is much, much better. In fact, he’s so happy with his improvement he called the drug manufacturer to tell them they need to run a publicity campaign to promote diflucan for chronic lyme disease.

        JN: Some patients on some internet groups are adapting your protocol, probably in concert with their doctors, and I’d like to know what you think of this. They are suggesting staying on diflucan for 9 months, and some of them are adding in low-dose minocycline. Are you aware of this?

        FS: No, I am not aware of this.

        JN: What do you think of the idea?

        FS: I believe in the narrow-spectrum penicillins for borrelia, not the cyclines.

        JN: What about 9 months?

        FS: That remains to be seen. Perhaps, like tuberculosis, some patients will need to be on diflucan at least six months or more. Borrelia is a very sophisticated organism, and one of the few bacterium with two cell membranes. There is much we still have to learn about it.
    • artur737 Re: "Sezon na kleszcza" 07.04.06, 15:01
      The Scrutiny Ends For Igenex Labs – A Lyme Disease Specialty Lab
      CTLymedisease.org

      By Mark Leavitt, 11/18/05

      "In light of the numerous hearings on Lyme disease across the country, to follow the CDC recommended guidelines will miss many patients resulting in misdiagnosis that can be devastating if the disease progresses to a later stage. Awareness of the flawed CDC two tier testing system demonstrates the need for State and Local governments to step in to help the patients that are being misdiagnosed or under diagnosed because of the CDC’s flawed testing. IGeneX Labs has recently passed two inspections for its biannual recertification from the State of California. A federal inspector also arrived simultaneously. The inspection was intense, with a focus on the Western Blots. The lab has been fully recertified."

      -Nick Harris, CEO, IGeneX Labs, Statement to the Greater Hartford Lyme Disease Support and Action Group, 11/19/05



      We can all breathe a sigh of relief, Igenex labs that specialize in tick-borne disease testing passed certification not only by the state of California, but by the state of New York that put a big blot on the labs Western Blot Lyme disease test prompting for investigation because Igenex purportedly performs inaccurate lyme disease testing. Igenex was put through this scrutiny due to an article that came out in the New York Times on August 2005. The article starts off profiling a patient with disabling pain and exhaustion. Doctors couldn't figure out what was wrong with him and even ruled out Lyme disease until one doctor sent his blood work to Igenex Labs. The controversy started when the results came back from Igenix positive for Lyme disease by the ELISA and Western Blot test. Another doctor got involved in the case from New York and tested the patient's blood numerous time for Lyme with negative results using a different lab and insisted he did not have Lyme disease. Then, the New York State Department of Health started investigation proceedings on Igenex labs located in California.

      What is interesting in all of this is Lyme Disease is a clinical diagnosis and testing is supportive only. Most Lyme disease specialists agree that testing can be inaccurate and should not be relied upon for definitive diagnosis of the disease. The ELISA is the most performed and least expensive Lyme disease test and can be inaccurate. The more expensive Western Blot test is better but is not performed if the ELISA is negative. The Western Blot also takes longer for results. The CDC recommends this two-tier approach and is what most doctors follow: the ELISA test is performed first then the Western Blot only if the ELISA is positive. What many patients do not know is they can have a negative ELISA test but have positive results from the Western Blot indicating Lyme disease. The patient may never get to the second tier (Western Blot) resulting in misdiagnosis that can be devasting if the disease progresses to a later stage.

      One has to ask the question how does the ELISA test know if you had the Western Blot and why is the two-tier recommendation strongly emphasized by the CDC? Dr. Paul Mead of the Center of Disease and Control stated in the article on using this recommended two-tier approach as well as his concerns with Igenex laboratory tests in regard to accuracy and clinical usefulness. Yet, Dr. Mead stated at the state of Connecticut Department of Public Health Hearing on Lyme Disease in January 29, 2004; "there will always be some patients with Lyme Disease whose illness does not meet the national surveillance case definition. For this reason, CDC has stated repeatedly that the surveillance case definition is not a substitute for sound clinical judgment. Given other compelling evidence, a physician may choose to treat a patient with Lyme Disease when their condition does not meet the case surveillance definition."

      The challenge for better Lyme disease testing as well as needed research into this disease seems to be apparent and is long overdue. Is it because one may be crucified or ridicule along the way? Igenex Labs created two new tests in 2001 called the Lyme Disease urine antigen Assay (LDA) and the Reverse Western Blot (RWB). Both of these tests detect Lyme antigen shed in the urine. Dr. Paul Mead at the Connecticut Lyme disease hearing stated; "the CDC supports national surveillance, epidemiologic response, field and laboratory research, consultation and educational activities through intramural initiatives."

      Is Lyme disease testing only good if it's created under the guidelines and watchdog of the CDC as suggest by Dr. Paul Mead when he states through intramural initiatives. If that is the case, it is no wonder lyme disease testing as well as a cure for this illness is going no where. Lyme disease has reached its 30th anniversary this year and were no better off then thirty years ago except for public awareness. Doctors are still confused on testing, diagnosis and treatment. Lyme disease specialists in the state of Connecticut are far and few in the very heartland where the disease was first brought to public attention in Old Lyme, CT. The doctors that are willing to treat the disease are always at risk of being persecuted for using long term antibiotics if they feel the patient meets the clinical diagnosis. In the past, some Connecticut Lyme doctors have been investigated and risked losing their medical licensee. This has resulted in the very low numbers of doctors willing to treat the disease in Connecticut and many other states.

      Many patients are told they don't have Lyme disease and a postive lyme test means negative. The doctors do not want to touch this disease and now laboratories are being scrutinized. Long term antibiotics are considered a death sentence for the use of Lyme disease yet they are used long term for teenagers for acne and other disorders. Lyme patients end up taking medications to alleviate symptoms of muscle and joint pain and other discomforts. Many are told they need to a see a psychiatrist that usually starts a new battery of psychiatric drugs. What about the side effects of these type of drugs? In fact, most psychiatric drugs we do not understand how they work on the brain and what the damage long term may be, yet this is perfectly acceptable.

      In the end, the patient suffers enduring worsening symptoms over time. Let me repeat that statement one more time, because nobody seems to hear this: the patient suffers in the end with worsening symptoms. I truly believe this disease can be cured but for some reason we don't want to. The public and social demand as well the economics and political bureaucracy will determine the future of Lyme disease.

      In the meantime, you have to sort through this maze yourself and endure a roller coaster ride of our current medical system and make your own personal assessment if you have Lyme disease or not. I only hope the right decision is made for anybody in this predicament because the wrong decision will lead to more treatment trails and health complications due to this dreaded illness.
    • artur737 A twist of Lyme 13.04.06, 18:22
      The Medical Post
      April 11, 2006 Volume 42 Issue 13

      A twist of Lyme

      With difficult diagnoses and heated debate, the Public Health Agency of Canada is trying to straighten out confusion over Lyme disease


      By Carol Hilton

      Toronto | Some call it the "master mimic." Some call it the fastest-growing vector-borne disease in North America. Others view it as a fad illness—one that is being over-diagnosed due to persistent lobbying.

      Lyme disease has become a polarized topic in Canada, with controversy borne of physicians attempting to accurately diagnose and treat the relatively rare condition amid patients' fears of misdiagnosis and underrecognition.

      "Fundamental disagreements have raised tensions between, on the one hand, the Lyme pressure groups that quite rightly are doing the best they can to ensure the disease is properly recognized and that people are getting treatment and, on the other hand, the science-based organizations that base their understanding on the evidence they have in front of them in terms of hard data," said Dr. Paul Sockett, director of the foodborne, waterborne and zoonotic infections division at the Public Health Agency of Canada (PHAC) in Ottawa.

      While the risks of incorrect diagnoses and unnecessary treatment with antibiotics are real, a lot has changed since Canada's Lyme disease guidelines were issued in 1991.

      Now, the PHAC is tackling the daunting task of assessing 15 years worth of conflicting and politically charged research to redefine how physicians should be diagnosing and treating Lyme. This is particularly important now that the number of recognized endemic areas has risen from one at the time the guidelines were produced to at least seven across Canada today. But for their efforts to make a difference in the proper care and recognition of the disease, PHAC officials will have to bridge the gap between these disparate groups to heal old wounds of distrust and skepticism.

      Lyme, Connecticut

      Public action actually played an important role in the original discovery of Lyme disease's presence in North America in 1975. It started when a woman named Polly Murray contacted Yale researchers about an unusual cluster of pediatric arthritis cases in her small-town of Lyme, Conn.

      Dr. Allan Steere, a rheumatology resident at the time, investigated the cases and identified the new clinical entity as "Lyme arthritis" in 1977. The name was changed to Lyme disease two years later when other symptoms, including neurologic problems, were discovered.

      Then, in 1982, Dr. Willy Burgdorfer (PhD), an entomologist with the National Institutes of Health in Montana, identified the infectious agent as the spirochete now known as Borrelia burgdorferi, a bacterium transmitted to humans through the bite of certain species of ticks.

      While the disease was found in rapidly growing numbers and expanding endemic areas around the U.S. in ensuing years, Lyme was at first seen as a very limited threat in Canada. More than 20,000 new cases of Lyme were reported to the U.S. Centres for Disease Control and Prevention in 2003. In Canada, where reporting is voluntary and this activity varies from province to province, the total number of cases reported to the PHAC from 1994 to 2004 was 345, with a high of 54 cases in 2000.

      "In comparison to reported cases in the U.S., Canada's numbers are relatively small," said Dr. Sockett. "Also in comparison to the U.S. and the geographic size of Canada, we are aware of a relatively small number of areas where the disease has been confirmed as endemic."

      Indeed, until recently only one area with an established, breeding population of Lyme-infected ticks had been identified in Canada: Long Point, Ont., a protected nature reserve on a peninsula on Lake Erie. This made it seem unlikely that Lyme would be seen commonly in Canadian patients without them having travelled to an area where Lyme was known to occur.

      However, with the rise of the Internet and of vocal patient groups in the U.S. who claimed the disease was often going misdiagnosed there, more and more Canadians with mysterious illnesses began to think Lyme might be the answer.

      In theory, Lyme is a clinical diagnosis easily identifiable by the hallmark erythema migrans rash (a bulls-eye shape) in association with a tick bite while the person was in an area endemic for Lyme. However, not all patients have the EM rash. The PHAC Web site says 70% to 80% of infected patients experience it but other researchers stake it at fewer than 50% of the patients they've seen.

      Also, the validity of serological lab tests used to confirm diagnoses is hotly debated.

      The CDC and the PHAC recommend the two-step process of an ELISA test followed by a Western blot, but the tests can produce both false positives and false negatives.

      "Blood tests may be negative in patients with early Lyme disease or in patients who have had antibiotic treatment," information on the PHAC Web site states. "However, the accuracy of blood tests for patients with later stages of Lyme disease approaches 100%."

      Patient advocacy

      These statements enrage Jim Wilson, the president and founder of the Canadian Lyme Disease Foundation, a patient advocacy group. After testing negative twice in Canada, Wilson suffered severe Lyme symptoms for almost three years before independent labs in the U.S. confirmed the diagnosis (many patients turn to these U.S. labs when they think they have Lyme).

      "We don't believe there's Lyme disease under every rock and stone," Wilson said from his home in Westbank, B.C. "We know that an awful lot of cases that are suspected are quite likely not Lyme disease. But at the same time we are also aware that they (doctors) are missing a lot of the disease."

      But the CDC issued a caution last year that a number of these commercial U.S. labs were using unvalidated tests or unapproved interpretive criteria. In Canada, most provinces do their own testing but can also send samples to the National Microbiology Laboratory in Winnipeg. While he agreed some labs are better than others, Wilson resents the skepticism both Canadian and U.S. physicians have for the independent U.S. testing centres, noting his association has a list of recommended labs on its Web site (www.canlyme.com).

      "This is a very important issue," said Dr. Sockett. "It is certainly becoming clear that there are issues around the serological reaction to the organism itself, which plays into the accuracy of the tests. But it is extremely important for any test utilized that the diagnostic criteria be as good as we can make them, that the tests are fully validated and that they have a high degree of both sensitivity and accuracy."

      Unfortunately, as advocacy groups' frustrations rose over strict scientific criteria, so did the heat some of them directed at researchers. Infectious disease experts felt they—and not the science—were being personally attacked for cautiously requiring more evidence of Lyme before blindly treating with open-ended antibiotics.

      To get a researcher to speak on the subject, the Medical Post had to take the unusual step of granting an interviewee anonymity after several declined due to the political pressure surrounding the disease.

      "There's a certain Lyme lobby that says Canadian physicians know nothing about it and they miss it and don't treat it properly," said a Halifax-based clinician. "Having said that, I think there are very few patients with Lyme disease out there who would present with a typical rash of Lyme disease that a physician would not at least consider it in their differential diagnosis."

      He stressed he is sympathetic toward patients who have suffered with undefined illnesses who believe they might have Lyme, but he said he is concerned Lyme has simply become a fashionable diagnosis.

      "In our society there appears to be a need to attribute these non-specific syndromes to specific disease entities. A
      • artur737 Re: A twist of Lyme 13.04.06, 18:24
        And whether it's chronic Epstein-Barr virus infection, or chronic candidiasis, environmental hypersensitivity or Lyme disease, it's simply the de rigeur explanation, and the medical community is always attacked when it raises legitimate questions about the scientific veracity of the evidence. . . . And in many ways it's a battle I don't think we can win."

        Seen up to 30 doctors

        But some physicians consider Lyme a growing threat. Dr. Ernie Murakami, a family physician in Hope, B.C., became interested in Lyme after developing a technique to safely remove ticks. After learning more about the disease at conferences, he said he has now seen and treated hundreds of patients who had previously gone undiagnosed and untreated.

        "Many of them had seen up to 30 doctors before I saw them, and I treated them and they improved," Dr. Murakami said. "A lot of people are missed, and the longer it goes the more difficult it is to treat."

        A member of the board of directors of the Canadian Lyme Disease Foundation, Dr. Murakami said Lyme is called a "master mimic" because it can resemble a wide variety of conditions, including multiple sclerosis, rheumatoid arthritis, Parkinson's, lupus, ALS as well as psychiatric illnesses. He noted many of the patients he's seen are in the later stages of Lyme and have received a variety of these diagnoses, only to have the symptoms resolve when given lengthy treatment with antibiotics.

        Lyme caught in its early stages is usually treated successfully with a four-week course of antibiotics. But Dr. Murakami has found it doesn't always work for the complex cases he more often sees. "It was thought at one time that 30 days of any antibiotic was enough. That may have held at one time, but that doesn't hold now and that's what many (refractory) cases have been treated with," he said. "It's very difficult to treat and everyone is different in their response."

        Early and late Lyme disease represent a significant dichotomy that has contributed to disagreements on treatment and the prevalence of Lyme, according to Dr. Brian Fallon, director of the Lyme Disease Research Program at the New York State Psychiatric Institute. He said academic physicians by nature will tend to focus on early Lyme, where the diagnosis is reliably made based on the EM rash, and 99% of patients will improve and not experience chronic symptoms.

        "So you won't believe chronic Lyme is a real issue, and the people who don't have the EM rash will never come to see you because you focus on the EM rash. So you'll never see the chronic Lyme patients and if you do, you'll ask them about the rash and they won't have had it, because if they did they would have gotten help and not have symptoms now. It's a Catch-22 situation in which those who spend their career focusing on early Lyme disease don't know much about late disease, and vice-versa."

        In looking to the future, Dr. Fallon said he thinks diagnostic tests will improve significantly in the next several years, but advances in treatment will take longer. "Treatment studies are massively expensive and take a long time to do," said Dr. Fallon, who is also an associate professor of clinical psychiatry at Columbia University in New York. "There aren't going to be many treatment studies of chronic Lyme disease, so that will mean debate about the treatment is going to continue for some time."

        The PHAC's Dr. Paul Sockett agrees that a lot of issues around Lyme have evolved slowly over the years, "but it is becoming increasingly clear to us that there are changes in things like the ecology of the disease in this country. There obviously are issues and concerns within the public arena about the diagnosis of this disease. . . . So these are the sorts of things that have prompted us at this point in time to say, 'Yes, now we need to update the guidelines.' "

        Risk of contracting Lyme

        Recent government research has revealed the risk of contracting Lyme disease in Canada, while still relatively small, is actually greater than it was thought a couple of years ago.

        One study of climate change suggests warming trends will favour a northern range expansion in Canada of the main Lyme vector, the black-legged tick Ixodes scapularis (in B.C. the vector is the western black-legged tick, Ixodes pacificus). But even more significantly, PHAC scientists have discovered there are more endemic areas of black-legged ticks than previously known, and ticks could in theory be transported anywhere in Canada by migratory birds.

        Dr. Robbin Lindsay (PhD), an entomologist based at Health Canada's National Microbiology Laboratory in Winnipeg, first studied the limited population of Lyme-bearing ticks at Long Point, Ont., in 1989 when it was thought to be the only endemic area in Canada. Since then, he's identified breeding populations in Ontario's Point Pelee National Park and Rondeau Provincial Park; several areas of B.C., including parts of Vancouver Island, throughout the Fraser Valley and into the Okanagan Valley; in Lunenburg, N.S., and a possible new site of the ticks identified in the fall of 2005 in Bedford, N.S. There were also three surprising cases of Lyme diagnosed in southeastern Manitoba last year, but in those cases it was suspected that ticks had been "parachuted in" on migratory birds rather than newly established populations.
        • artur737 Re: A twist of Lyme 13.04.06, 18:24
          However, Dr. Lindsay explained that while it is now theoretically possible for a person to contract Lyme anywhere in Canada, not all ticks are infected with the Lyme bacterium. He said the highest infection rate among the ticks is in the Long Point, Ont., population, where 50% to 60% are positive, while at Point Pelee the rate is 5%. In the Lunenburg population, about 27% of the ticks tested positive. And based on ticks sent in from non-endemic areas, only about 10% are infected with the spirochete. In B.C., while the western black-legged tick is more widespread, the infection rate in these ticks is only 1% to 3%.

          "Things really have changed in the last 15 years with respect to distribution of this tick, and are likely to change more in the future," said Dr. Lindsay. "So we try to let people know as best we can that there's a potential for them to come in contact with these ticks, but I'm not absolutely sure of the level of awareness out there."

          According to Jim Wilson, current awareness of Lyme is insufficient. He said he frequently gets calls from individuals who are dismissed by their physicians when they ask about Lyme disease as a possible explanation for their symptoms. "I recently heard from one young lady from North Battleford, Sask., who spent three years in the bush on a wildlife course, banding ducks and geese. Two years ago she got sick and exhibited symptoms of Lyme or MS, and was given a cursory diagnosis of MS. When she asked the doctors about the possibility of it being Lyme-related, she was told by the neurologist that Lyme disease is an American disease. And her family physician laughed, saying, 'Unless you've been to Long Point, Ont., you don't have Lyme.' No tests were ordered or anything."

          This is where good communication would help ensure that the public and the medical profession are getting the right information, said Dr. Sockett. While some provincial health ministries have fact sheets available on their Web sites and even mail out reminders to physicians each season, the PHAC felt it was time to get the various interest groups together for open discussion. So the PHAC hosted a two-day meeting in Toronto in early March with all of the stakeholders.

          Before the event, Dr. Sockett said it would be an opportunity to "talk about these issues, try and identify where the gaps are in our knowledge, rather than have them as confrontation points, and identify them as research needs that need to be addressed by the scientific community as a whole."

          After the conference, Dr. Sockett said the meeting provided an excellent opportunity to review new information about Lyme disease ecology in Canada and to address issues related to the 1991 guidelines. "Discussion groups made a number of recommendations for changes to the existing guidelines and identified specific gaps which will need to be addressed through ongoing and new research. Not all issues were solved, but it was agreed we would put in place a process to complete the revision of the guidelines and maintain dialogue on Lyme disease issues."

          For Wilson, he said while he was glad the conference had taken place, he was disappointed the groups could not reach a consensus on a satisfactory clinical definition of Lyme disease. "But what we did accomplish and agree on is that these ticks can be found anywhere in Canada."

          At the conference, Dr. Harvey Artsob (PhD), chief of the PHAC, said there's no question there has been a spread of established Lyme areas. "The issue of Lyme will only become greater. It is a rare disease but it is preventable and treatable. We need to help people better understand it and help physicians to understand the risk."

          The revised guidelines are expected to be released later this year.
          • viiking Re: A twist of Lyme - komentarz 02.05.06, 16:50
            Re: 'A twist of lyme' article by Carol Hilton.
            in April 11, 2006 Volume 42 Issue 13

            I found Carol Hilton's article titled 'A twist of Lyme' balanced and well presented.

            The comments of the anonymous Halifax clinician regarding the 'certain lobby group', which would be
            us at the Canadian Lyme Disease Foundation, underscore the resistance to accept the evidence that
            they may have it got wrong in some cases and in fact have been proven wrong in some cases.

            By this clinician suggesting doctors would diagnose the EM rash correctly states what we hope would
            be the case. In reality, the EM rash is not so easily identified because it takes many forms, not
            simply the bull's eye...to imply this has not been a problem for clinicians is indicative of
            inexperience.

            That we are simply a lobby group is dismissive unless of course we look at the lobby associations
            this clinician belongs to who have put in place guidelines and rules governing my health.

            The facts are that the EM rash does not occur in the majority of cases. In fact as reported in
            February 2006, statistics from Texas, Connecticut, and California health departments showed the
            rash occurred in a range of 35% to 59%.

            Dr. S. Banerjee, when he was at the BC Centre for Disease Control found the rash occurred in only
            18% of cases confirmed in their lab. Many other studies have shown similarly varying results.

            This begs answers from PHAC as to why are only one set of data in Canada looked at when dealing with
            lyme and why do these data always, without question, serve to minimize the impact of this illness?
            Why do these data ignore or exclude the broader global knowledge base regarding lyme and to what
            purpose are these data ignored or excluded?

            We have asked PHAC to remove their websites' claims regarding the rash and also late stage testing
            accuracy (these accuracy numbers are derived from creative definition of what late lyme is). We
            want to review their evidence with our scientists for its validity. Nothing yet has come from our
            request.

            Of course via creative definitions you can define away anything if you so choose. If one defines
            being human as only those with dark hair and blue eyes in spite of the abundance of evidence to the
            contrary, and you do so while holding all access to the publishing of these definitions you have
            achieved four things. One, you can immediately plug your definition into the system because you hold
            all the cards (ie. public money with which you control publishing). Two, you have created a false
            divide between what you tout as fact and what is reality over which the less than well funded
            victims have to try to overcome. Three, the average doctor who needs that definition has neither
            the time nor money to do his own research therefore the doctor must trust the system. Four, you in
            this case also hold the funding monies to choose not to use to do the research needed to prove
            otherwise.

            What we are asking, and more and more groups are asking is, why has public money been used to
            present only one perspective as fact when dealing with something as serious as ones health? Why
            have certain lobby groups been given domain while other stakeholders are excluded. We do not believe
            this is right, and we feel we have as much right to have evidence reviewed by those in science of
            our choice as do those in control of the funds. This review must then be followed by consensus
            incorporating stakeholders and users of that evidence.

            This conference was the first step toward this.

            Borrelia burgdorferi has now been found in the brain tissue and cerebrospinal fluid of Alzheimer's
            patients and other dementia patients, and in multiple sclerosis 38.5% of patients tested positive
            for lyme disease in one of many studies indicating a definite connection between these similarly
            presenting diseases. I quote, "Neuroborreliosis is frequently indistinguishable from multiple
            sclerosis (MS) on both clinical and radiologic grounds ( Agosta, F, et al.)".
            • viiking Re: A twist of Lyme - komentarz 02.05.06, 16:51

              Canada has high rates of MS and Alzheimer's, but virtually no lyme. Canadians who had been given an
              MS diagnosis improve or recover when diagnosed and treated for lyme in a percentage of cases. We
              need to find out why, and to find out what data are accurate.

              As Dr. Fallon's research at Columbia University and that of researchers around the world has found,
              psychiatric presentations are more common in neuroborreliosis than recognized.

              Many diagnoses have been tied directly to lyme disease.

              With this in mind one main goal of the Canadian Lyme Disease Foundation is to have a dedicated
              Canadian lyme disease research facility established with an emphasis on post mortem and live study
              of lyme and the many illnesses linked to it. Lyme is a growing and already serious issue for
              Canadian health care budgets therefore the need is clear.

              It is this type of research that will explain how this disease is being found in such numbers in
              other diagnoses.

              We want our politicians, medical authorities and medical schools to support us in this regard.

              Here is a quote that further validates our goal and hopefully inspires introspective thought in
              those who feel they, and only they have the correct answers.

              "At the end of the twentieth century, the etiology of myriad chronic diseases remains unexplained."
              Curr Clin Top Infect Dis1998;18:180-200

              Regards
              Jim Wilson,
              President, Canadian Lyme Disease Association.
              www.canlyme.com <www.canlyme.com>

              some of many references if needed.
              Current Microbiology 2006 Apr;52(4):330-2. Epub 2006 Mar 9,
              J Alzheimers Dis. 2004 Dec;6(6):639-49,
              J Am Geriatr Soc. 2003 Apr;51(4):579-80
              J Neurosci1999 Dec 15;58(6):779-90
              Ann Agric Environ Med 2000;7(2):141-3)
              CLD Fdn www.canlyme.com/phys.html#other <www.canlyme.com/phys.html#other>
              www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search&DB=pubmed
              <www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search&DB=pubmed>
              Wien Med Wochenschr. <javascript:AL_get(this, 'jour', 'Wien Med Wochenschr.');> 1995;145(7-8):186-8
              <www.canlyme.com/phys.html#other>


              Regards
              Jim Wilson
              www.canlyme.com
    • artur737 Federal health officials sound alarm for Lyme dise 20.04.06, 08:16
      Od dzisiaj lekarze w Kanadzie nie maja prawa negowac pacjentom rozpoznania boreliozy na podstawie "na naszym terenie ta choroba nie wystepuje". Cala Kanada zostala uznana przez rzadowe organa za strefe gdzie mozna sie nabawic boreliozy.

      Federal health officials sound alarm for Lyme disease
      Wed, 19 Apr 2006
      CBC News Canada

      With ticks carrying Lyme disease bacteria turning up in new places in Canada, doctors should look at the disease as a possible cause of arthritic and neurological ailments, federal health experts say.

      The ticks live in tall grass or on the woodland floor. If a Lyme-infected tick bites, it can inject bacteria that cause serious illness, though it's rarely fatal.
      After realizing there are more infected ticks than thought, the Public Health Agency of Canada is reworking its guidelines on the diagnosis and treatment of Lyme disease. In the meantime, the agency is alerting doctors.

      "There's a theoretical possibility that patients in areas where we hadn't currently shown the ticks to be established could have Lyme disease," said Harvey Artsob, a director of zoonotic diseases and special pathogens at the National Microbiology Laboratory in Winnipeg. "It's a relatively low risk, but the risk exists."

      Ticks that carry Lyme disease are considered "established" around Lunenberg, N.S., along Lake Erie in Ontario, and parts of southern B.C.

      An area near Halifax and one in southeastern Manitoba are also under investigation for the ticks.

      "We expect as our climate continues to warm and other factors come into play, we're going to have an extension of our Lyme problem," said Dr. Kevin Forward, the head of microbiology for Capital Health in Halifax.

      Diagnosis and treatment
      Lyme disease can be difficult to diagnose unless people develop the tell-tale "bull's eye" rash. Other symptoms such as fatigue and joint pain can look like the flu or other conditions, and lab tests of blood are imperfect.

      If treated early with antibiotics, patients usually make a full recovery. But left untreated, Lyme disease can lead to chronic arthritis, numbness and paralysis.

      Glenn Turner owns a woodlot in New Ross, N.S., near Lunenberg. When Turner was diagnosed with Lyme disease three years, it wasn't a mystery. He had the typical red spots on his chest, and was sick with fever and hallucinations.

      "You're in the woods, in the woodlot, the whole day long," said Turner, who was prescribed antibiotics and is now fine. "So I don't know what time of day I happened to pick the tick up at. Sometimes they can be on for days before you realize they're there."

      Migratory birds can also bring Lyme-carrying ticks to areas where the bloodsuckers aren't established.
      • artur737 Re: Federal health officials sound alarm for Lyme 20.04.06, 08:18
        I troche polgebkiem przyznano, ze uzywany obecnie test na te chorobe (ELISA) jest to kitu.
        • wroteknowynick Re: Federal health officials sound alarm for Lyme 20.04.06, 14:42
          no i Good
          Kanadyjczycy i mieszkańcy Wlk Brytanii chyba mają najwięcej problemów z diagnozą
          i leczeniem chronicznej boreliozy.
          • artur737 Re: Federal health officials sound alarm for Lyme 20.04.06, 16:13
            Mysle, ze Polska ma znacznie wiecej. W Polsce jest to problem nierozpoznany.
    • artur737 Looking for answers 26.04.06, 18:43
      Looking for answers
      Kelowna Capital News Apr 23 2006

      Alison Kirby peers through the blinds at a world where she once played tennis and golf with her new husband.

      In the five years since her marriage, she’s been virtually confined to the house, suffering from a debilitating mysterious illness. She now believes she suffers from Lyme disease—a controversial topic receiving plenty of media play despite official contentions it’s not an issue for Interior residents.

      Her advice comes from two sources—a doctor under peer scrutiny for his willingness to believe, and a Westside resident whose on-line support group and website form the basis of a growing national advocacy movement.


      Diagnosis still rebuffed
      By Jennifer Smith
      Staff reporter
      Apr 23 2006


      For 13 years, Westside resident Jim Wilson fought his way back from the dead, suffering from a devastating illness that left him teetering on the brink of insanity.
      Sitting in his basement this spring, some 6,000 kilometres from the Nova Scotian town where he first felt his life begin to change, the father of two relayed a terrifying tale. He recalled a morning just before his diagnosis when he slid behind the wheel only to find his memory vanquished, all memory of how the vehicle worked gone.
      Just as recollections of close friends were fading in and out, basic day-to-day skills appeared to dissolve from memory overnight.
      At one point in his illness, Wilson looked like a stroke survivor, half his face drooping from an inexplicable palsy.
      An active baseball fiend who played his way to provincial championships in the months before he first took ill, Wilson’s mind and body deteriorated so badly he could barely make it up the stairs.
      Then in 1993, he met Dr. LaVerne Kindree, a Squamish-based physician whose daughter had contracted Lyme disease.
      Lyme disease is a bacterial infection caused by a tick bite. Known for the distinctive bullseye rash that frequently forms around the bite, the disease leads patients down a destructive path from nausea and exhaustion into the eerie world of nervous system failure. The symptoms often include shakes, arthritic-like joint pain, memory loss and debilitating confusion.
      After his diagnosis, Wilson endured two years of antibiotic treatments to regain his life.
      Although he remained incapable of working due to memory problems, life in the Wilson household had virtually returned to normal.
      Then, three years ago another cruel twist of fate brought his ordeal to the surface once more.
      A decade after Wilson’s diagnosis, his daughter, nine years-old when her father took ill, found herself coping with similar symptoms.
      Despite their move across the country to the Okanagan, an area where Lyme disease is not supposed to occur, the now 19-year-old’s body was failing without medical explanation, in a hauntingly similar fashion to her father’s.
      Out of province testing would confirm the family’s worst fears. She too had fallen victim to Lyme disease.
      While the B.C. Centre for Disease Control (BCCDC) would never confirm either case, Wilson contends a doctor currently shunned by the medical system saved the young woman’s life with antibiotic treatments that continued far longer than the prescribed two-week term.
      Now 22 years old, she lives with a pacemaker as the disease managed to work its way into her heart.
      Wilson wants to make sure other British Columbians, and other Canadians for that matter, know more about the disease that’s brought his family to its knees.
      • artur737 Re: Looking for answers 26.04.06, 18:44
        What is Lyme disease?

        By official numbers, the disease is rare at best. Provincial diagnostic tests churn out roughly three to six cases of Lyme disease per year in B.C.
        More pervasive than AIDS in endemic parts of the United States, particularly along the eastern seaboard, cases of Lyme disease in the Central Okanagan simply don’t exist—or didn’t.
        In December, Westside resident Dennis Stead (who coincidentally is dating Wilson’s niece) came forward as the area’s first BCCDC confirmed Lyme disease patient in the Okanagan who appears to have contracted Lyme here.
        Local health officials aren’t ready to confirm where he got the disease, stating it is possible Stead took a trip outside the Okanagan.
        However, Stead says he hasn’t left the area in years.
        “I was bit out on Westside Road there,” he said, in a follow up interview this week.
        Having completed his antibiotic treatment, Stead is thankful his connection to Wilson led doctors to catch the problem early.
        His life has since returned to normal and he wants others to be aware of what lurks in Westside grasses.
        But according to BCCDC physician Dr. Muhammad Morshed, getting Lyme disease is no easy task—particularly in the Central Okanagan.
        Lyme disease is caused by a long spiral-shaped bacteria named borrelia burgdorferi, one of 10 bacteria which can be carried in a tick’s belly.
        In order to the get the disease, you must first be bitten by a tick carrying the bacteria.
        In B.C., Morshed said there are three types of tick vectors for borrelia burgdorferi—Ixodes scapularis (deer tick), Ixodes pacificus (Western blackleg tick) and Ixodes angustus.
        So far, the BCCDC has found 10 Ixodes angustus ticks in the Central Okanagan. —the varietal least likely to carry the borrelia bacteria.
        In order for infection to occur, the tick needs to be on the body for 24 hours and transfer between 10 and 100 infectious spores to the unlucky individual as it suckles their blood—assuming the tick has the bacteria in the first place.
        Even among those which act as disease vectors, few have the bacteria.
        Of the those 10 Ixodes angustus collected in the Okanagan, for example, none were found containing borrelia burgdorferi.
        “From our surveillance 0.3 per cent of ticks are positive in our province,” said Morshed, adding that Lyme disease is a recognized problem in the Lower Mainland and Vancouver Island.
        Every year the BCCDC collects ticks from around the province as concerned veterinarians and health centres follow up on the centre’s requests for the specimens.
        As far as Morshed can tell, the level of infection remains constant, but the tick population is slowly spreading toward the Interior.
        For Wilson, even finding the Ixodes angustus ticks shows it’s possible there’s more going on out there than official numbers verify.
        “They only spent an afternoon and they were able to get 10 of these ticks,” he said.
        “To me, that says they’re pretty easy to find.”
        He believes it warrants further exploration, especially when those who contract Lyme disease often suffer without diagnosis for so long.
        Like syphilis, another disease caused by bacterial infection which eventually mimics symptoms of neurological and mental illness, patients suffer through continual bouts of flu-like symptoms advancing toward more serious problems like arthritic pain, exhaustion, confusion, and in rare cases, death.
        For Kari Benum, an upbeat young Kelowna mother recovering from years of suspected Lyme infection, the unpredictability of the disease was just as terrifying as being sick.
        She watched as her energy level waned. One morning she’d wake up with an unexplained rash, the next morning she would find something wrong with her vision.
        “I just want others to know that you can recover from this,” said Benum, who was actively involved in Wilson’s on-line support network while undergoing treatment.
        Benum was diagnosed while living in the Kootenays.
        Unlike most physicians in B.C., her doctor was willing to pursue treatments outside BCCDC standards and helped her access a strong long-term intravenous antibiotic treatment which took nine weeks.
        Others have gone on oral antibiotics for years, trying to rid their system of disease.
        It’s risky practice both for the patient and the population at large, said Morshed.
        “If you believe in science, then you accept the published evidence that 95 per cent of patients diagnosed properly are fine with two weeks of antibiotic treatment,” he said.
        “These people are suffering chronically. You take them off the antibiotic, they somehow get worse.
        “We are overloading our system with antibiotics…creating super bugs. If something is unproven, then it is dangerous to go through that regime.”
        But that means accepting the diagnosis—or lack of diagnosis for that matter.
        The test

        The BCCDC uses the internationally recognized testing standards, matching two sets of blood work with physical symptoms.
        The tests confirm the patient’s exposure to borelia burgdorferi, though none can confirm active illness.
        Instead, the blood work tests for the body’s immune response by determining whether the patient has ever formed antibodies to combat the bacteria.
        Under CDC guidelines an Enzyme-Linked ImmunoSorbent Assay Test (ELISA for short) is conducted first and must produce a match on two out of three antibody protein strands marked for testing.
        Unfortunately, ELISA doesn’t narrow the field enough, producing too many false positives—catching additional immune responses, Morshed said.
        To narrow down the diagnosis, the lab moves on to the Western Blot test, looking for a match of five out of nine proteins.
        That is narrowing the field too far, by Wilson’s standards.
        Both Wilson and Benum’s confirmations came from private American labs where they say researchers have more freedom from the overly strict guidelines set out by the CDC.
        The labs producing positive test results only require one protein match on the ELISA test and two out of nine on the Western Blot, Morshed said.
        That’s an issue which has raised eyebrows and prompted investigations in at least one American lab—although that lab remains open.
        Despite persistent controversy, Wilson believes widening the diagnostic standards would help catch numerous cases the BCCDC has overlooked.
        He points to cases like Benum and thousands of others accessing his on-line support group as proof that the standards need a second look.
        After all, it may take several years of antibiotics to see improvement, but many of these patients knocking on death’s door are getting better.
        The dilemma

        Two men lie at the centre of the Lyme disease controversy in B.C.
        Whether they act as saviors or misguided zealots leading sick people down the wrong path, remains to be seen.
        But Wilson has definitely caught the eye of national media.
        In 2003, he combined cross-country advocacy efforts by creating the Canadian Lyme Disease Foundation.
        Google the words “Canada” and “Lyme disease” and the non-profit organization’s site is always among the first hits. Formerly the owner of a publishing company, Wilson knew how to stir the public pot, going from 37 hits a day in his first weeks on line to more than 40,000 today.
        And when tick season begins, his numbers swell to over 60,000 people accessing his database per day.
        Interviewed by Global television, CBC and for local stories in Kelowna and Kamloops several times in the last two months, Wilson is becoming the face of Lyme disease in Canada, and he hopes the government is listening.
        Early last month, a national conference on Lyme disease convened in Ontario, with experts from across the country reviewing diagnostic crite
        • artur737 Re: Looking for answers 26.04.06, 18:45
          Early last month, a national conference on Lyme disease convened in Ontario, with experts from across the country reviewing diagnostic criteria.
          The last conference of a similar nature was held in 1993, the same year Wilson was diagnosed.
          This time more than 100 experts were unable to come to a new consensus on Lyme disease criteria.
          Wilson says he smells a cover-up propagated by big pharmaceuticals, those which would benefit by continued testing and antibiotic treatment, rather than finding a cause and cure.
          While Wilson pressures officials, Dr. Ernest Murakami is diagnosing and treating patients on the basis of their symptoms, sending failed tests from the BCCDC out of province for confirmation in American jurisdictions.
          Based out of Hope, the doctor serves on the Canadian Lyme Foundation’s board of directors. He’s been investigated by the B.C. College of Physicians and Surgeons and ridiculed by the medical community.
          At one time a medical health officer in the Fraser Health Authority, Murakami said he has been asked not to use the term in reference to his career, and has drawn criticism for the flippancy with which he doles out potentially harmful drugs.
          The B.C. College of Physicians and Surgeons cannot comment on ongoing investigations and their website shows no mention of his name among the 72 doctors listed as facing disciplinary action since 1998.
          By all accounts, Murakami is the only doctor in the province following these methods, working against a system which bases its findings on repetition.
          Proof among scientists depends not upon the ability to create a finding, but on other scientists’ ability to replicate your findings, over and over and over again given the same conditions.
          Not that Murakami doesn’t want to try.
          A professor at the University of British Columbia, he preaches to the newly initiated—those likely to question, accept or at least listen to his theories. He believes cysts form in his chronically ill patients storing bacteria. The cysts burst, re-infecting the patient and producing a continual state of new infection that will slip under the radar of the Western Blot test.
          The implications

          If Lyme disease is more prevalent than the Canadian medical system currently acknowledges, then it’s possible people diagnosed with other ailments may be misdiagnosed.
          A Swiss researcher working in Vancouver, Judith Mcklossy believes in Wilson’s efforts. She is working to make the connection between Alzheimer’s disease and borelia burgdorferi.
          Mcklossy contends many diseases, like amyotrophic lateral sclerosis (ALS) or multiple sclerosis (MS), could have pockets of misdiagnosed Lyme disease patients within their ranks.
          Morshed also believes in continuing to ask questions, but he’s willing to wager there’s more to this story than Lyme disease or the other bacteria contained within ticks.
          “We should keep our thinking broad, not look for certain things. There could be something else going on in these people’s lives that they are suffering from and we really should look toward that goal rather than trying to prove they have Lyme,” said Morshed.
          School teacher Alison Kirby isn’t buying it. A member of Wilson’s on-line support group, she’s part way through treatment prescribed by Murakami.
          When she heard the Okanagan’s confirmed case in December was being chalked up as a only a possible Okanagan connection, she cried.
          (Interior Health Authority senior medical health officer Dr. Paul Hasselback and Morshed also believe travel likely accounts for the sporadic incidents of the disease outside the Lower Mainland and Vancouver Island.)
          “I’m not the person who’s out there doing hikes everyday and if this has happened to me, why does it have to be so rare?” she asked.
          “I think a lot of people are going undiagnosed or misdiagnosed.”
          While Morshed may disagree, he believes Lyme disease is definitely worth talking about.
          He recently published a paper proving infected ticks can be moved from one region to another via migrating birds; although even then it would take years for the bacteria to spread, he said.
          “There is a risk, definitely. We are seeing that the ticks are migrating slowly towards the Interior. I used to start seeing ticks in May, June and now they’re coming to my office in January and February,” he said.
          He thinks that phenomenon is likely due to climate warming.
          “The best way to deal with the risk is to take proper precautions.”
          jsmith@kelownacapnews.com
          • artur737 Re: Looking for answers 27.04.06, 19:30
            Komentarz do artykulu wydrukowany dzien pozniej

            Tracking down lyme disease



            Apr 26 2006


            To the editor:
            I would like to thank Jennifer Smith for her article on lyme disease (Looking for Answers, April 23 Capital News).
            The article was balanced yet some people have called us indicating they were left with a poor impression of Dr. Murakami. They felt the article painted him as a doctor who is shunned by all his peers. We agree it did appear to shed a poor light on a very good doctor.
            We want to clarify that Dr. Murakami is well respected in his field and in fact was awarded the Gold Medal from UBC medical school recently for his many years of educating our upcoming medical students with regards to lyme. All of Dr. Murakami’s methods are based in medical science and backed by many years of global research. Many doctors Canada-wide support Dr. Murakami. There are half a dozen doctors themselves or their children with lyme in Canada, and equally as many or more veterinarians and vet assistants. Guess whose methods they want to be treated by?
            Virtually every doctor in North America who treats lyme disease on a regular basis has been placed under investigation by their licensing boards because the doctors refuse to do harm to their patients by following a very flawed set of guidelines drafted for the sole purpose of keeping the budgets of corporations and government healthy at the expense of the health of the individual. Dr. Morshed of the B.C. Centre for Disease Control implied there was good science regarding the early diagnosis and treatment of lyme. He is correct. The problems arise when the disease goes undiagnosed, untreated, or under-treated. That is where science and outcomes support Dr. Murakami.
            The testing methods our BCCDC use are highly controversial and have failed every major research study examining whether they are a reliable test for diagnosis. The most recent extensive study was done at Johns Hopkins University the results of which were published last year.
            If the BCCDC is so confident of their testing, allow us and our scientists to participate in triple paired blinded challenges to their tests—the same blinded and rigorous challenges the independent U.S. labs have to go through (who pass with flying colours) regularly and who test many Canadians positive after negative BCCDC tests.
            Until we can participate in such a challenge those in charge of your health can continue to claim confidence levels that are not supported.
            It is neither appropriate nor responsible to imply, as Dr. Morshed did, that overuse of antibiotics has a role in deciding the treatment protocol of this illness. So long as we allow antibiotics to be used in our animal feed, and so long as in most parts of the third world you can get antibiotics over the counter with no prescription there is absolutely no evidence that treating lyme creates superbugs anymore than tuberculosis treatment does. This is more apparent disinformation.
            • artur737 Re: Looking for answers 27.04.06, 19:30

              Regarding my comments about the involvement of pharmaceuticals in a cover-up. My concerns were with the wealthy global insurance industry. I did say that the medical insurance industry has been active in downplaying this illness, from prevalence to treatment, and have been using very poorly done research to deny claims for very sick people world-wide. This fact has been addressed at federal and state hearings in the U.S.
              Globally lyme disease is a pandemic and yes it has been directly linked in MS, Alzheimer’s and ALS diagnoses. We have never indicated it was the only cause of these diagnoses as implied by Dr. Morshed. We agree broad thinking is needed and this certainly has not been the case to date with regards to lyme disease in Canada.
              If lyme disease is so difficult to contract, as Dr. Morshed indicated, why is it showing up in these other diagnoses in such numbers? According to Dr. Morsheds’ statistic, less than one per cent of our ticks have lyme in B.C. Our ticks in many cases come from California and elsewhere on birds, a fact which has been established by research co-authored by Dr. Morshed.
              Robert Lane of the University of California Berkeley found a tick infection rate of 41.5 per cent in nymphal ticks (the stage most frequently infecting humans) and four per cent in adults. So are Dr. Morsheds’ statistics for nymphal or adult ticks?
              By not giving all the data it can change the face of risk dramatically. We would like to participate in and validate tick surveillance studies funded by taxpayer dollars and in fact we can provide more person-power to do the necessary field work.
              Lyme disease is an extremely debilitating and life altering illness yet those in charge of our health use taxpayer dollars to under-inform the public in all aspects of this disease—a public who has the right to balanced “informed consent.”
              Jim Wilson, AIIC,
              president, Canadian Lyme Disease Foundation
              www.canlyme.com
              • artur737 Re: Looking for answers 27.04.06, 19:35
                I jeszcze jeden komentarz

                Apr 26 2006


                To the editor:
                I read, with interest, your Sunday front page article about lyme disease. The tone of the article left doubt that lyme disease exists in the Okanagan and basically suggested that the severity of the B.C. lyme problem is not recognized by Centre for Disease Control (CDC). Instead, the reader was left with a debate of the controversy of the Lyme Disease Foundation’s beliefs, and questions about the credibility of the treatments provided by Dr. Ernest Murakami, who because of the unreliability of testing for lyme, treats patients initially on the basis of clinical symptoms.
                Of the possible 10 bacteria carried in a tick’s belly, the emphasis in your article was on one bacteria, borrelia burgdorferi. This led to the impression that lyme disease or borrelia is the one disease to test for and treat. The article then goes on to say that of the 10 ixodes ticks found in the Okanagan, these were the least likely to carry borrelia. There was no mention of the fact that disease is often transmitted from the nymph phase of the ticks, when the tick is the size of a poppy seed, when one has not seen the tick, or in over 50 per cent of cases does not recognize that a tick bite has taken place.
                In front of me, I have a CDC lab report indicating that my husband has tested positive for babesiosis,(caused by protozoa), suggestive of infection with the West Coast species, ixodes pacificus, western black legged tick. Since he has been ill in recent years, while seeking conventional treatment locally, he has not left the Okanagan except for an occasional trip to the East Kootenay region. After being given a fatal, non-treatable diagnosis by the local medical system, we found a Globe and Mail article which described symptoms of lyme disease—we noted that my husband had over 50 symptoms of lyme. We visited Dr. Murakami in Hope, who immediately began antibiotic treatment for lyme disease while awaiting the CDC test results which had been sent to Atlanta, Georgia for further testing. After several months of the antibiotic treatment for lyme, the babesiosis is now being treated specifically with anti-malarial type drugs, which have heavy side-effects and are very costly.
                The severity of this disease has enormous implications to quality of life, particularly to one who is 75 years old and who must rally tremendous courage to fight against the debilitation. Once the treatment for babesiosis is finished, the co-infections of lyme will need further treatment to, perhaps, “hold them in check” before relapses occur.
                The symptoms of babesiosis are severely debilitating and include, night sweats from fever, shaking chills, insomnia, constant muscle twitching, fatigue, headache, imbalance, air hunger, cough and encephalopathy all magnified by the presence of other lyme co-infections. Since this co-infection, babesiosis, may be transmitted to others by blood donations, one notes the danger of not knowing that you have this protozoa in your body. Approximately 66 per cent of lyme infected persons have the risk of babesiosis which is potentially life-threatening to the patient and a silent danger to our blood supply.
                We support the Canadian Lyme Foundations’ urging that the amount of ticks collected for testing should be increased. Research and development of accurate diagnostic testing for patients presenting with a myriad of symptoms suggestive of lyme, would go a long way toward alleviating the suffering of those who now must wait for proper diagnosis. Patients presently advance towards chronic debilitating illness, and in rare cases, death, while waiting for a diagnosis or dealing with mis-diagnosed illnesses when accurate tests for lyme should become as routine as any tests presently administered by M.D.s on regular office visits.
                Since lyme exposure in dogs is estimated to be approximately 10 times greater than that reported in humans, residents of the Okanagan should also be concerned about the possibility of lyme disease whenever a dog presents with fever, lethargy, loss of appetite, depression, arthritis, or sudden onset of pain and lameness. Note that blood transfusions from dog to dog may also transmit babesiosis.
                Thanks to your article, I now “know” at least seven people who have lyme disease here in the Okanagan—unbelievable isn’t it, when the CDC indicates that the risk is so low? Hundreds more, with similar stories join the lyme discussions on the Canadian Lyme Disease Foundation website. Thanks to all who are willing to raise their voices for this silent epidemic and its torturous consequences. I believe that there is significant praise and credit due to “a doctor who believes” in Hope.
                Jean Christensen,
                Kelowna

    • hbinko Re: "Sezon na kleszcza" 28.04.06, 09:32
      28.04.2006 artykuł w Superexpressie
      Czeka nas rok kleszcza
      Już dawno nie było tyle kleszczy! Przysłużyła się im śnieżna zima i wilgotna
      wiosna. Topniejące masy śniegu w połączeniu z przygrzewającym słońcem obudziły
      więcej niż zwykle "wampirów". Już atakują ludzi i zwierzęta. Są w tym roku
      wyjątkowo zajadłe.


      - W tym roku kleszcze mają rzeczywiście wyjątkowo dobre warunki rozwoju -
      twierdzi biolog z Akademii Medycznej w Lublinie, prof. Jadwiga Buczek.

      Jan Skiepko (42), rolnik spod Hajnówki na Podlasiu, przecierał oczy ze
      zdziwienia, gdy z położonego na skraju lasu pola wrócił do domu.

      - Kilkanaście kleszczy wytrzepałem z ubrania, choć to dopiero koniec kwietnia -
      dziwi się mężczyzna.

      Po sutym posiłku kleszcze potrafią dziesięciokrotnie zwiększyć swój rozmiar.
      Podczas jedzenia wstrzykują nam groźne choroby, m.in. boreliozę i kleszczowe
      zapalenie mózgu.

      Do Instytutu Medycyny Wsi już od kilkunastu dni zgłaszają się chorzy ukąszeni
      przez kleszcze. Dr Jolanta Chmielewska-Badora nie pozostawia złudzeń.

      - To groźne choroby, które nieleczone mogą zakończyć się śmiertelnie -
      przyznaje i podkreśla, że leczy się je wyjątkowo ciężko. Również dlatego, że
      wiele osób przychodzi po pomoc bardzo późno. Kleszcz znieczula miejsce
      ukąszenia i jego ofiary nawet nie wiedzą, że stały się posiłkiem...

      - Naprawdę nie wiem, kiedy doszło do zakażenia- mówi Marcin Goś (30), leśnik ze
      Świdnika. Czuł się coraz gorzej: bóle głowy, stawów nie dawały mu spokoju.
      Dobrze, że choroba nie zaatakowała układu nerwowego lub nie spowodowała
      zapalenia mięśnia sercowego.

      Na spotkanie z kleszczem radzimy dobrze się ubrać, najlepiej w dopasowane do
      ciała jasne rzeczy, skarpety, wyższe buty, a na głowę obowiązkowo czapkę.
      Preparat odstraszający kleszcze też nie zawadzi.

      Najważniejsze jednak, to po powrocie do domu dokładnie obejrzeć się w lustrze.

      Jak pozbyć się owada?
      Najlepiej pęsetą, zdecydowanym pionowym ruchem. Lepiej go nie ukręcać, ponieważ
      możemy urwać tułów pajęczaka, a jego głowa zostanie w skórze. Miejsce po
      kleszczu dokładnie zdezynfekować.

      Na szczęście nie wszystkie są groźne
      - Spośród ok. 20 żyjących w Polsce gatunków jedynie te z rodziny Ixodes są
      niebezpieczne. I to nie wszystkie, a jedynie co piąty.

      - Kleszcze uwielbiają obrzeża lasu, leśne polany, zalesione brzegi jezior, nie
      gardzą też łąkami, a nawet miejskimi parkami. Wybierają rośliny niskie, do 150
      cm wysokości.

      autor: Adam Kierdej, Lublin
    • artur737 Sleuthing Lyme 01.05.06, 21:38
      San Francisco Chronicle
      Sleuthing Lyme

      Jenny Jedeikin

      Monday, May 1, 2006

      More than 25,000 people in the United States contracted Lyme disease in 2005, but the actual number of cases, the Centers for Disease Control and Prevention concedes, may be 10 times higher than that. The numbers for Lyme disease in California are three times higher for 2005 than for the previous year. Despite that fact, the CDC recently warned the public that some private medical laboratories may be overdiagnosing positive results of Lyme disease to better their business.

      Independent scientific studies suggest this is not true. The discrepancy stems from the fact that the CDC's recommended test for Lyme uses far too narrow criteria for recognizing the illness. Its approved enzyme-linked immunosorbent assay (or ELISA) Lyme test has been shown to be only 65 percent accurate, according to testimony given in a state Senate Committee on Health and Human Services' investigation of the matter; even less so when the test is done several months after a patient has been infected.

      A Palo Alto laboratory, IGeneX, tests for additional Lyme antigens. After the government-recommended ELISA test missed chronic Lyme disease in bestselling author, Amy Tan, IGeneX detected Lyme antibodies. Tan had seen 10 doctors who had missed it, too.

      Many other victims of chronic Lyme disease are finally accurately diagnosed after using the more sensitive tests. In New York state proficiency tests, IGeneX has received a score of better than 95 percent, and, out of 58 labs tested, only IGeneX, had a perfect score for its Western "blot proficiency test. Yet, in 2005, the CDC warned about Lyme tests "whose accuracy and clinical usefulness have not been adequately established."

      This warning is a great disservice to Lyme-disease victims who turn to these laboratories for answers after months, and often years, of painful, unexplained symptoms.

      The California Legislature recently passed Resolution No. 103, declaring the month of May Lyme awareness month. Yet, despite this fact, the larger medical community of California still doesn't recognize the seriousness of this illness. Many doctors continue to tell patients they can't even contract Lyme disease here.

      Research by UC Berkeley entomologist, Robert Lane, proves otherwise. His independent studies show that 36 percent of the residents of the San Francisco Bay Area have antibodies to tick saliva of I. pacificus
      • artur737 Re: Sleuthing Lyme 01.05.06, 21:58
        Ten artykul odpowiada na zarzuty roznych lekarzy, ze borelioza jest choroba nadmiernie rozpoznawana.
        Ostatnio laboratoria robiace testy na borelioze w USA zostaly skontrolowane, w tym glowne laboratorium robiace testy na borelioze - Igenex.

        Wynik kontroli jakosci tego laboratorium usadowil je w pozycji lepszej niz 95% ogolu kontrolowanych placowek, sugerujac, ze jest to jedno z lepszych laboratoriow diagnostycznych.
        Sposob robienia WB przez Igenex zyskal szczegolna pochwale kontrolerow.
    • artur737 New York Times 05.06.06, 06:26
      Tym razem nienajgorszy artykul. Niedawno probowali podwazac najlepsze laboratorium Igenex. Skonczylo sie na lawinie wscieklych listow od pacjentow a Igenex przezyl rzadowa kontrole jakosci. Jak pisalem w innym watku kontrola wykazala wysoka jakosc wykonywanych testow. Byc moze NY Times stara sie teraz troche zrehabilitowac.

      By TINA KELLEY
      Published: June 4, 2006
      REPORTED cases of Lyme disease in the metropolitan region rose sharply in 2005, according to health officials, with increases of 34 percent in Connecticut, 23 percent in New Jersey and 9 percent in New York State.


      Susan Stava for The New York Times
      Reports of Lyme disease increased in the metropolitan area last year, and awareness of it has been rising, too.


      In the Region
      Long Island, Westchester, Connecticut and New Jersey
      Go to Complete Coverage » But some counties showed declines. Westchester had 458 reported cases, a decrease of 39 percent from 2004. On Long Island, Suffolk County, with 542 cases, declined 3 percent, while Nassau County, with 122 cases, had an increase of 107 percent.

      Fluctuations in case numbers are common, officials said, and the causes are difficult to pinpoint. Connecticut's increase last year, to 1,810 cases, is "right within what we've been seeing historically for the past 15 years," said Randall Nelson of the infectious disease division of the State Department of Public Health. "There's variation from year to year."

      Contributing factors are food supplies for deer and rodents, which carry the ticks that spread the disease; weather (ticks have a two-year life span and flourish during warm, wet winters); and human activity, including prevention efforts and disease reporting.

      Mid-May to early July is peak season, when about 90 percent of cases are transmitted, officials said. The disease often causes a bull's-eye-shaped rash near a tick bite. It can spread through the body if left untreated, causing arthritis, cardiac irregularities and neurological problems.

      Reported cases have been increasing over the last decade, experts say, partly because of greater awareness of the disease.

      "There's either a real increase or an increase in recognition, and it's probably a combination of both," said Dr. Steven E. Phillips, the immediate past president of the International Lyme and Associated Diseases Society. The disease was first identified in the 1970's in Lyme, Conn., thus giving it its name.

      Another expert, Eddy Bresnitz, the state epidemiologist in New Jersey, where 3,372 cases were reported in 2005, cited the increased proximity of humans to wildlife. "There's more and more suburbia constructed closer to parks and areas where there's increased vegetation," he said. "We have more deer and more deer ticks."

      Anyone who walks through leaf litter in the woods or on the edge of fields or lawns this time of year should check regularly for the nymphal stage of the tick, said Durland Fish, a professor of epidemiology at the Yale School of Medicine. The size of a poppy seed, the tick spreads 95 percent of cases, Dr. Fish said.

      Some prevention efforts appear to be working. In Hunterdon County in New Jersey, the rate of reported cases fell almost by half, to 268 per 100,000 residents in 2005 from 554 in 1996. For comparison, the rate of Lyme disease nationally in 2005 was 6.7 cases per 100,000 people, and it is 27.4 in the 12 Eastern and Midwestern states where it is most common, according to the Centers for Disease Control and Prevention.

      Hunterdon experienced an increase in the number of cases in the 1990's after the completion of a section of Interstate 78 in western New Jersey in 1968 led to housing construction and more people moving into deer habitat, said John W. Beckley, director of the County Health Department.

      He said some of the recent decline in Lyme disease in the county might be attributable to public health efforts that included putting signs in county parks warning visitors to check for ticks; distributing fliers about the disease to doctors' and veterinarians' offices, garden centers and schools; and publishing a Lyme-O-Meter in a local newspaper announcing the level of tick danger each week.

      Dr. Andrea Gaito, a rheumatologist in Basking Ridge, N.J., in neighboring Somerset County, said in mid-May that she was already seeing three to four new cases of Lyme a week.

      "There's more awareness, that's what brings people in early, and that's the good news," she said. "It makes early diagnosis and treatment so much better." As a result, she said, she is seeing fewer cases of chronic Lyme disease, which she estimates account for 15 to 20 percent of cases.

      Kim Uffleman, 49, of Rivervale, N.J., in Bergen County, suffers from the chronic form of the disease, which she contracted 17 years ago. Nine months after being bitten by a tick, she was bedridden, and it was two years before Ms. Uffleman, who used to run almost 50 miles a week, could leave her house without help. It took her too long, she said, to find a doctor who could give her a clear diagnosis, even though she had had the classic bull's-eye rash.

      "I grieve the loss of my health, and that I had to raise three children while being extremely ill," she said. "They know nothing except for a sick mother, and that's very difficult."

      She still has headaches, back pain, fatigue, numbness in her hands and burning pain down her arms.


      • artur737 Re: New York Times 05.06.06, 06:26


        Pat Smith, president of the Lyme Disease Association, a national nonprofit group based in Jackson, N.J., said her group had helped develop two bills now before Congress that would provide $100 million for research, education and prevention, in part to develop a definitive diagnostic test.

        People who receive an early diagnosis and treatment with antibiotics generally recover and do not develop chronic symptoms. But diagnostic tests have only been about 50 percent accurate, Ms. Smith said, adding that she has seen an increase in chronic cases since the disease was identified, because as the number of cases grows, the number of undiagnosed, misdiagnosed and slowly treated cases has also grown.

        "Some people have to go to dozens of physicians before they get diagnosed, and people are getting delayed or inappropriate treatments," she said.

        Linda Davis, 42, of Freehold, N.J., in Monmouth County, had misdiagnoses of multiple sclerosis and fibromyalgia, among other ailments, before learning she had Lyme disease in 2003. She was using a wheelchair when she finally started receiving proper treatment.

        Her sons, Austin Hutcherson, 8, and Myles Hutcherson, 6, also have the disease.

        "None of us had the bull's-eye rash," she said. After receiving antibiotics, they are all doing better, though they still have symptoms; Austin has gastrointestinal problems, and Myles has chronic fatigue.

        "We try to keep everything normal," she said. "They're always playing outside. Most people don't even know they have Lyme disease."

        Ms. Smith said the Lyme Disease Association was also raising money for an endowed research center at Columbia University devoted to chronic Lyme disease and supported research into the genome of Borrelia burgdorferi, the bacteria that causes Lyme disease.

        Researchers at the University of Medicine and Dentistry of New Jersey in Newark are determining the genetic structure of 17 strains of the bacteria, with help from researchers at the Institute for Genomic Research in Rockville, Md., Stony Brook University and the University of Utah.

        One New Jersey researcher, Dr. Steven Schutzer, said, "Knowing the genetic sequence will help in diagnostics, and possibly different kinds of therapeutics."

        Despite concerns about the disease, Mr. Beckley, the Hunterdon County health officer, urged people to enjoy the outdoors.

        "You can go on as many hikes as you want through the woods, but stay on the path," he said. If you must go off the path, "you should tuck your pants in your socks," he said, and use insecticides or insect repellent and check for ticks on yourself, your children and pets after being outside.
    • artur737 Z Washington State 05.06.06, 16:33
      Walla Walla Union-Bulletin
      Walla Walla, Washington
      May 18, 2006 Marquee magazine

      Sneaky Lyme disease mimics symptoms of other illnesses
      By Annie Charnley Eveland (book reviewer)
      COVER TO COVER

      An innocuous rash appeared on the 12-year-old
      La Grande girl's lower left leg. The small, dual red, itchy
      spots resembled mosquito bites.

      A mystery creature had bitten Lauren while she was
      visiting in Wisconsin. Within three days, the spots
      developed into definable rings. Lauren could hardly
      move from the pain in her back and neck; her eyes were
      sore and she had a fever of 103.3 degrees Farenheit. She
      was head-achey, nauseated, her eyes were sensitive to
      light and her joints and muscles hurt.

      Her bull's eye marks (a small dot that turns into a ring
      around a central red circle) are classic signs of early
      Lyme disease.

      Lauren's previously energetic life was turned
      upside down while her mother, writer Karen P.
      ``Trish'' Yerges, desperately fought conflicting diagnoses
      and sought adequate, appropriate treatment for her
      daughter.

      Lauren's eight-month, life-altering saga led to Trish's
      collaboration with Rita L. Stanley on the book
      ``Confronting Lyme Disease, What Patient Stories Teach
      Us.'' It outlines the debilitating cases of 14 sufferers, including Lauren.

      ``Having been a parent of a Lyme disease child, I acquired
      an insider's viewpoint as to the depth of suffering that can
      be experienced with this disease.

      ``I felt the panic when an unexpected obstacle to
      diagnosis or treatment occurs. Tests that show false negatives, treatment guidelines inadequately short in duration and the presence of co-infections---these are some of the many obstacles I encountered in dealing with my own daughter's case of Lyme disease,'' Trish said.``There is a grave need for physicians to become more knowledgeable about the symptomology of Lyme disease.''

      Twenty thousand cases are reported annually to the
      Centers for Disease Control (in actuality, that figure more correctly represents about 200,000 cases per year), yet
      many physicians do not recognize the presence of the
      disease in a clinical setting.

      ``Legitimate cases of Lyme disease are falling through
      the cracks of the medical system and at the same time,
      these cases are being misdiagnosed as other
      diseases that share common symptomology with Lyme
      disease.''

      The spirochete bacteria is borne by infected ticks that
      live in the Pacific Northwest in Washington, Idaho, and
      Oregon; the coastal Northeast, from Maine to
      Washington, D.C.; and in Minnesota, Michigan, and
      Wisconsin.

      Diagnosis is difficult because of inconsistent lab
      tests, medical controversy in treating it and a broad range
      of symptoms that resemble other illnesses. The
      prescribed antibiotic treatment is often too brief to
      halt symptoms, which then causes the bacteria to spread
      further.

      Early, prompt and adequate treatment often
      stops complications such as heart palpitations, numbness
      and tingling, enlarged lymph glands, facial palsy and
      involvement of organs from developing. Misdiagnoses can include identifying the symptoms as illnesses such as
      fibromyalgia, multiple sclerosis and rheumatoid
      arthritis.

      The authors reveal through research and interviews with a number of Lyme disease sufferers that the ailment can
      become chronic when medical attention with long-
      term antibiotic treatment isn't aggressive and doctors don't bend beyond what standard treatment guidelines allow.
      The book stresses the need for competent medical
      treatment.

      ``I have seen Lyme disease transform brilliant minds into confusion, dementia and profound depression,'' wrote Dr. Lesley Ann Fein, medical director of the Lyme Disease Society in West Caldwell, N.J.

      ``I urge all physicians who are treating Lyme disease to
      continue to fight for your patients because the tide is
      turning.''

      ``It behooves all medical professionals and especially
      clinicians to learn much more about how to recognize Lyme disease. It is among the fastest growing infectious
      diseases in the United States and it is rendering formerly
      healthy and active men, women and children disabled
      and chronically ill for life,'' Trish said.

      Rita, of Portland, holds a Ph.D. Trish lives and writes in La Grande.

      Annie Charnley Eveland can be reached at acharnley@ubnet.com or (509) 525-3300 ext. 280.

      ABOUT THE BOOK
      ``Confronting Lyme Disease, What Patient Stories Teach Us,'' by Karen P. ``Trish'' Yerges and Rita L. Stanley, 335 pages, paperback, $20 plus shipping/handling, ISBN: 1-4196-2165-3; a premier edition is $24 and includes 14 color photos, The Mitre's Touch Gallery, 1414 Adams Ave., La Grande OR 97850, (541) 963-3477 or www.confrontinglyme.com.

      Annie Charnley Eveland
      Columnist
      Walla Walla Union-Bulletin
      112 S. First Ave.
      P.O. Box 1358
      Walla Walla WA 99362
      (509) 525-3300 ext. 280
    • artur737 Re: "Sezon na kleszcza" 11.06.06, 04:59
      www2.townonline.com/harvard/artsLifestyle/view.bg?articleid=513954
      The Barbard Post
      Lyme disease: a public health crisis2-4908
      By Steven E. Phillips, M.D.
      Friday, June 9, 2006

      A Florida State quarterback is found half-naked and disoriented in downtown Tallahassee. Pop singer Daryl Hall cancels part of his national concert tour. Author Amy Tan is writing a new book about it.

      The picture is clear: Lyme disease has hit the front burner.

      Lyme disease is a major public health problem and growing crisis. It's the most prevalent bug-borne illness. According to the Centers for Disease Control and Prevention new cases are reported in about 20,000 people yearly and this number represents a 10-fold underestimate.

      Lyme disease is caused by a complex bacterial agent carried and spread by ticks. The Lyme bacteria have the ability to evade immune destruction, entrench themselves deep within tissues and migrate throughout the body with impunity causing a multi-system illness that can be baffling to many physicians.

      The result is that one tiny tick bite can cause innumerable symptoms running the gamut from muscle and joint pain to heart disease to neurological and even psychiatric illness. Lyme patients may be misdiagnosed as having other serious diseases such as lupus, multiple sclerosis, rheumatoid arthritis and psychiatric disorders. The take-home message is Lyme disease may be hard to diagnose and difficult, if not impossible, to fully eradicate, if not caught early. There are several reasons for this.

      First, there is no single reliable diagnostic laboratory test. The common two-tiered blood test cannot be solely relied upon for diagnosis. The initial ELISA screening test can give up to 50 percent false negative results, and just as disheartening, many laboratories interpret the second Western Blot test by highly restrictive CDC criteria that miss many cases. Better tests are described in the medical literature, but haven't seen the light of day. So some patients seek more sophisticated testing by approved reference laboratories - labs within a single state that get samples from around the country - but which often don't take their insurance companies and frequently pay for their tests out-of-pocket. Furthermore, a person with "Lyme disease" may be co-infected with other organisms and "co-infections" often require different antibiotic therapy compared to Lyme.

      Second, there is no universally accepted treatment. During chronic infection the organism burrows deep into tissues that some antibiotics can reach only marginally. This is but one of many reasons why a two-to-four week treatment cannot eliminate chronic infection. The consensus opinion of the International Lyme and Associated Diseases Society is that an individualized treatment approach is necessary based on clinical judgment. ILADS is a multi-specialty medical society composed of virtually all sub-specialists who treat Lyme disease, including infectious disease specialists, neurologists, rheumatologists, psychiatrists, endocrinologists and internal medicine physicians. The society has published diagnostic and treatment guidelines in peer reviewed infectious disease medical literature, which stand in stark contrast to the guidelines of some infectious disease specialists who reject voluminous medical data documenting persistent infection and co-infection.

      ILADS believes it is essential for patients with Lyme symptoms to be tested for multiple tick-borne disorders. They encourage the education of all medical personnel about the array of Lyme symptoms and its related infections in order to increase the number of health care providers who can recognize and treat these illnesses.

      Dr. Steven E. Phillips is a practicing physician from Wilton and is president of the International Lyme and Associated Diseases Society (ILADS)
    • artur737 Re: "Sezon na kleszcza" 16.06.06, 20:23
      Dr.Jemsek (znany z napisania tekstu w naszych materialach dla lekarzy) zostal ukarany rokiem pracy 'pod nadzorem' za: dlugie leczenie boreliozy oraz za nie poinformowanie pacjentow, ze leczenie borelizy ma dwa standardy.
      Podobno kara jest wzglednie lagodna bo moglo byc gorzej np utrata licencji na stale.
      W obronie zeznawalo kilku innych lekarzy rowniez leczacych borelioze dlugoterminowo.
      Dr.Jemsek obiecal od tej chwili zawsze informowac pacjentow na temat kontrowersji oraz nie leczyc dozylnie tych chorych, ktorzy rozwijaja w tym leczeniu jakies powazne komplikacje takie jak np sepse. Ci pacjenci maja byc leczeni pozniej juz leczeni doustnie.

      Tego rodzaju procesy czarownic sa inspirowane w USA m.in przed IDSA. Organizacje majaca zero poparcia od pacjentow, ale za to duzo poparcia od ubezpieczalni.
      IDSA wg zalozycieli stanowi przeciwwage ILADS.

      W wielu amerykanskich stanach nie mozna postawic prawnie lekarza w stan oskarzenia za dlugie leczenie boreliozy np w Kaliforni absolutnie nie mozna, ale jak widac w niektorych innych ciagle jeszcze mozna.

      The Charlotte Observer June 15 2006
      State board suspends doctor's license
      KAREN GARLOCH
      kgarloch@charlotteobserver.com

      RALEIGH - The N.C. Medical Board decided Thursday to suspend for one year the license of Dr. Joseph Jemsek, saying he acted unprofessionally in his treatment of Lyme disease patients.

      The decision came after two days of hearing testimony from patients and medical experts before the 12-member board. The board had accused the Huntersville doctor of misdiagnosing at least 10 patients with Lyme disease and inappropriately treating them antibiotics for months or years.

      But the board said that Jemsek, who's also nationally known for his treatment of AIDS patients, will maintain medical privileges until July, when he meets with the board.

      Jemsek committed unprofessional conduct in the manner in which he treated the 10 patients whose cases the board reviewed and also by breaching informed consent, the decision said.

      Jemsek has practiced in the Charlotte area since 1979, first at the Nalle Clinic in Charlotte and since 2000 at the Jemsek Clinic in Huntersville.

      At the hearing Thursday, Jemsek, 57, defended his approach to diagnosis and treatment. His lawyer called two Lyme disease specialists from New York and Connecticut who supported Jemsek's contention that standard tests for Lyme disease are not reliable and that long-term antibiotic treatment is necessary for patients with chronic Lyme symptoms.

      During his testimony, Jemsek acknowledged that his practice has evolved over the years and that his office recently began using a new four-page form to explain to patients that his practice differs from the standard used by other N.C. physicians.

      He also acknowledged, under questioning by Charlotte board member Dr. Art McCulloch, that his office could have done a better job of taking care of one of the 10 patients, Heather Jenkins, when she called to complain about symptoms that turned out to be a sepsis infection.

      Jenkins, 32 of Huntersville, testified Wednesday that, while she was under Jemsek's care, she developed five infections as a result of having catheters in her arm and chest for delivering intravenous antibiotics for a year and a half. When she called Jemsek's office about the last infection, she said a nurse told her to take some antibiotics that were left from a previous infection. She was later hospitalized with sepsis, and said she nearly died.

      "I'm disturbed about that too," Jemsek told McCulloch on Thursday. "That's not acceptable." He said the clinic has a better system now. "I'm learning. We're trying to do the right thing."

      He also testified that, based on experience treating Lyme patients since 2000, he would no longer continue patients on IV antibiotics if they have developed one or two infections.

      The board heard from six patients
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