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    • 26.10.07, 20:32
      Karen Metzger oraz Leslie Pearce-Keatin zdecydowali sie zainteresowac wladze
      stanowe ogromnym problemem niewiedzy lekarzy w zakresie boreliozy. Wymienieni
      wyzej chorzy na borelioze oraz ich dzieci nie mogli w Ohio uzyskac zadnej pomocy
      i musieli podrozowac poza stan dla uzyskania diagnozy i leczenia.
      Celem oswiadczenia ma byc uzyskanie poparcia wladz dla uswiadomienia lekarzom,
      ze problem boreliozy w Ohio jest realny i musi byc zaadresowany.

      Legislators hear lyme disease testimony


      Dix Capital Bureau

      COLUMBUS -- Karen Metzger and Leslie Pearce-Keating had to travel to
      out-of-state physicians to get accurate diagnoses for the Lyme disease that has
      afflicted them and their children.

      On Thursday, they asked state lawmakers to approve legislation aimed at
      increasing awareness of the disease -- and potentially helping scores of Ohioans
      who may be infected but not know it.

      "We have suffered unbelievable stress due to the lack of knowledge from the
      medical community and the world at large," Pearce-Keating said. "... (T)he sad
      news is the doctors in Ohio are still unaware of Lyme disease. I often wonder
      how many sick people are in my town, in my state."

      Metzger added, "Fortunately, I learned about Lyme disease before I became
      permanently disabled or unable to work, but not everyone is so fortunate. I just
      want everyone to have a chance to be aware of this disease and to catch it early."

      The two testified before the House's State Government and Elections Committee as
      proponents of legislation that would designate May as Lyme Disease Awareness
      Month. House Bill 297 was introduced by Rep. Jim Carmichael, a Republican from
      Wooster, after hearing from constituents stricken with the disease.

      Gov. Ted Strickland and his predecessor, Bob Taft, issued proclamations marking
      the month, but Carmichael's bill would solidify the designation annually.

      Lyme disease is spread through tick bites and can affect people and animals.
      According to the Centers for Disease Control and Prevention, "Early
      manifestations of infection include fever, headache, fatigue and a
      characteristic skin rash called erythema migrans. Left untreated, late
      manifestations involving the joints, heart and nervous system can occur. "

      May is an appropriate month for the designation, Metzer said, because spring is
      when ticks and the animals that carry them (birds, deer, rodents) are more
      active and people begin spending more time outdoors. Metzger, wife of former
      state lawmaker and current Tuscarawas County Commissioner Terry Metzger, said
      she and her son have the disease. Pearce-Keating, who writes a regular column in
      The (Wooster) Daily Record (often about the disease), and her daughter and son
      also have been diagnosed with Lyme.

      "It has taken a huge toll on our family," she said. "I have been unable to work
      full-time as a teacher. ... (My daughter) did not attend full days of school for
      nearly six years."

      Following testimony Thursday, the State Government and Elections Committee voted
      to recommend approval of the legislation by the full chamber.

      Marc Kovac is the Dix Newspapers Capital Bureau chief. E-mail him at
    • 02.11.07, 15:41
      Potential for Lyme Disease Spreading at an Alarming Rate

      International researchers say spread of parasites could increase incidence
      of Lyme and other tick-borne diseases

      SHAWNEE, Kan., Nov. 1 /PRNewswire/ -- According to the world's top
      veterinary researchers, the numbers of blood-feeding parasites, such as
      ticks, are growing at an epidemic rate. Not only are their numbers
      increasing, but they are spreading rapidly across the country.
      The growth rates have state health departments across the United States
      implementing programs to warn residents of the influx of these parasites,
      the threat of diseases associated with them, and preventive measures they
      can take for themselves and their pets.
      What is causing the increase in parasites? Researchers are noting
      exceptionally warm weather has prolonged the activities of these harmful
      parasites tremendously and allowed deeper penetration into temperate zones,
      such as North America and Europe. As it has remained warmer longer, the
      life span of the parasites has increased as well. The longer the life span,
      the more opportunity for them to prey on humans. Unfortunately, these
      parasites not only are a nuisance, but they also are vectors of dangerous
      infections such as Lyme Borreliosis (Lyme disease).
      These parasites pose dangers to pets as well. Lyme disease is just one
      of many CVBD, which are caused by pathogens transmitted by vectors such as
      ticks, fleas, sand flies, or mosquitoes. Other CVBD include: Babesiosis,
      Ehrlichiosis, Leishmaniosis, Anaplasmosis, Bartonellosis, Rocky Mountain
      Spotted Fever (RMSF), and Dirofilariosis (Heartworm Disease).
      "In the past few years, we have seen a remarkable increase in CVBD
      across the country," said Susan Little, DVM, professor at the College of
      Veterinary Medicine at Oklahoma State University. "Ticks thrive in humid
      and brushy areas. The overall rise in global climate shifts is one of the
      leading factors to the spread of ticks and the diseases they carry," added
      Dr. Little, who attended the Second Annual Canine Vector Borne Diseases
      (CVBD) International Symposium held earlier this year in Italy, and is a
      leading researcher in the area of CVBD.
      According to the Centers for Disease Control and Prevention (CDC), the
      number of U.S. Lyme disease cases has doubled since its first becoming
      nationally reported in 1991 and strikes most severely in the northeast,
      mid-Atlantic, and north-central regions.(1)
      Symptoms and Disease Prevention
      In the early stage of Lyme disease, a person may suffer from symptoms
      such as exhaustion, chills and fever, headache, muscle and/or joint pain,
      swollen lymph glands, and a skin rash. If left untreated, long-term
      complications can be as serious as arthritis, nervous system problems,
      meningitis, Bell's palsy, and heart rhythm irregularities.(2)
      The CDC recommends the use of repellants to protect humans from ticks.
      The CDC states, "Use an insect repellent on exposed skin to repel
      mosquitoes, ticks, fleas, and other arthropods. EPA-registered repellents
      include products containing DEET (N,N-diethylmetatoluamide) and picaridin
      (KBR 3023). DEET concentrations of 30% to 50% are effective for several
      hours." It also states: "Apply permethrin-containing (e.g., Permanone) or
      other insect repellents to clothing, shoes, tents, mosquito nets, and other
      gear for greater protection. Permethrin is not labeled for use directly on
      skin. Most repellent is generally removed from clothing and gear by a
      single washing, but permethrin- treated clothing is effective for up to 5
      For canines, the researchers and scholars who participated in the
      recent symposium announced that monthly, year-round preventative treatment
      against ticks and mosquitoes is necessary to ensure the health of pets.
      Dr. Joe Hostetler, Veterinary Technical Services Manager at Bayer
      HealthCare, Animal Health Division, recommends, "Pet owners who are unsure
      which parasites are active in their environment should seek the advice of
      their veterinarian and follow the Companion Animal Parasite Council (CAPC)
      guideline of year-round treatment with a flea and/or tick preventative."
      For more information on Lyme disease and how you can protect your pet
      from ticks that carry the organisms that transmit disease, please visit
      www.petparents.com or www.lymediseaseassociation.org.
      About the Second Annual CVBD Symposium
      The Second Annual CVBD Symposium, sponsored by Bayer Animal Health,
      took place on April 26-27, 2007, in Sicily, Italy. The symposium brought
      together 33 experts from around the globe to discuss the topic of
      vector-borne diseases. These experts -- from the human medical field and
      veterinary medicine -- were parasitologists, clinicians, and specialists on
      infectious diseases. They discussed current information, studies they are
      presently conducting, and their future research plans. The symposium
      participants attended workshops with the common goal of creating a better
      understanding of these diseases. U.S. attendees included Dwight D. Bowman,
      Ph.D., College of Veterinary Medicine, Cornell University; Dr. Susan
      Little, Center for Veterinary Health Sciences, Oklahoma State University;
      Dr. Edward Breitschwerdt, College of Veterinary Medicine, North Carolina
      State University; and Dr. Ricardo Maggi, College of Veterinary Medicine,
      North Carolina State University.
      About Bayer Animal Health
      Bayer HealthCare's Animal Health Division is the maker of Advantage(R)
      flea control for cats and dogs and K9 Advantix(R), a flea, tick, and
      mosquito control product for dogs only. The division is a worldwide leader
      in parasite control and prescription pharmaceuticals for dogs, cats,
      horses, cattle, and poultry. North American operations for the Animal
      Health Division are headquartered in Shawnee, Kan. Bayer Animal Health is a
      division of Bayer HealthCare LLC, one of the world's leading healthcare
      About Bayer HealthCare AG
      Bayer HealthCare, a subsidiary of Bayer AG, is one of the world's
      leading, innovative companies in the healthcare and medical products
      industry and is based in Leverkusen, Germany. Bayer HealthCare generated
      sales amounting to some 9.4 billion euros and employed 33,800 people
      worldwide in 2005.
      The company combines the global activities of the Animal Health,
      Consumer Care, Diabetes Care, Diagnostics and Pharmaceuticals divisions.
      The new Pharmaceuticals division was established on January 1, 2006, and
      comprises the former Biological Products and Pharmaceutical divisions.
      Pharmaceuticals now have three business units: Hematology/Cardiology,
      Oncology, and Primary Care. Bayer HealthCare's aim is to discover and
      manufacture products that will improve human and animal health worldwide.
      The products enhance well-being and quality of life by diagnosing,
      preventing, and treating diseases.
      Forward-looking Statements
      This news release contains forward-looking statements based on current
      assumptions and forecasts made by Bayer Group management. Various known and
      unknown risks, uncertainties, and other factors could lead to material
      differences between the actual future results, financial situation,
      development, or performance of the company and the estimates given here.
      These factors include those discussed in our public reports filed with the
      Frankfurt Stock Exchange and the U.S. Securities and Exchange Commission
      (including our Form 20-F). The company assumes no liability whatsoever to
      update these forward-looking statements or to conform them to future events
      or developments.
      (1) Centers for Disease Control, MMWR Weekly
      <a href="www.cdc.gov/
    • 03.11.07, 15:51
      Masquerade fundraiser to help fight Lyme disease
      Posted by the Asbury Park Press on 11/1/07

      REGION — Dr. John Drulle knew first-hand how difficult it can be recognize and
      treat Lyme disease.

      Drulle, who opened a Jackson practice with his wife, Dr. Emilia Eiras, in the
      late 1980s, focused much of his professional life on raising awareness about the
      tick-born bacterial infection and helping patients who suffered from it. He also
      suffered from Lyme disease and ultimately died of complications from it in 2003
      at 59.

      But Eiras and others are continuing the fight against the disease. Eiras, a
      54-year-old Jackson resident, is president of the John Drulle M.D. Memorial Lyme
      Fund Inc., a nonprofit named in honor of her late husband.

      From 1 to 6 p.m. on Sunday, at Jenkinson's Pavilion in Point Pleasant Beach, the
      organization will hold its second annual Great Imitator Masquerade fundraiser.

      "Lyme disease is the great imitator. It imitates all illnesses," Eiras said.

      Lyme disease can be treated through antibiotics. But it can be very difficult to
      diagnose because its symptoms are so similar to other ailments, according to Eiras.

      Often, but not always, she said, a bull's-eye-shaped rash appears around the
      area of an infected tick bite. The patient may have some flu-like symptoms a
      couple of weeks later, but even this is not definite.

      It's not until months — or even years — after the initial infection that the
      more serious symptoms start appearing, Eiras said. These can include severe
      joint pain, heart problems and neurological effects.

      "They keep going to different doctors. They've gone to rheumatologists. Their
      joints are hurting. They start having chest pains — so then they go to a
      cardiologist," Eiras said.

      The key in combatting Lyme disease is to diagnose it long before such advanced
      symptoms appear, according to fund members.

      Lloyd Walling, an Englishtown resident who is a vice president and member of the
      fund's board of directors, said that despite the growing problem of Lyme
      disease, many people still don't recognize its danger.

      Walling's wife, Gail, also died of complications from the disease in the 1990s.
      He said she had the disease for several years before it was diagnosed.

      "You do have people walking around out there who aren't aware that this is a
      very troubling situation," said Walling, 62.

      In addition to proper and early diagnosis, people can take several steps to
      prevent Lyme disease, Eiras said.

      The Centers for Disease Control and Prevention recommends avoiding wooded and
      bushy areas with high grass or leaf litter, using insect repellents with 20 to
      30 percent DEET or permetherin content, and wearing long pants, long sleeves and
      long socks to keep ticks off the skin.
    • 07.11.07, 13:43
      Evidence Mounts Implicating Lyme Disease in the Autism Epidemic

      More proof that infections play a role in this childhood epidemic.
      The association between tick-borne infections, Lyme Borreliosis and autism
      spectrum disorders

      (PRWEB) November 7, 2007 -- A new article in Medical Hypotheses, "The
      association between tick-borne infections, Lyme Borreliosis and autism spectrum
      disorders" was released this week. Robert Bransfield, M.D., the main author
      collaborated with top doctors in both fields on this paper such as Jeff Wulfman,
      M.D., William T. Harvey, M.D. and Anju Usman, M.D.

      The summary of the article states that "Chronic infectious diseases, including
      tick-borne infections such as Borrelia burgdorferi may have direct effects,
      promote other infections and create a weakened, sensitized and immunologically
      vulnerable state during fetal development and infancy leading to increased
      vulnerability for developing autism spectrum disorders."

      Bransfield et al, examine clinical observations, case reports, laboratory
      testing of patients with Autism Spectrum Disorder for tick-borne diseases, brain
      imaging results, epidemiological findings, infections and autism,
      tick-borne/Borreliosis infections and psychiatric illness and many other factors
      in this collaboration of research findings.

      Numbers indicate that 20-30% of children with Autism Spectrum Disorder may be
      infected with Lyme Borreliosis and pathogenic Mycoplasma may be a contributor in
      58% of cases. With these staggering numbers, families and physicians need
      education on the proper testing and treatment methods currently available. With
      these 20-30% numbers representing around 140,000 cases of autism in the United
      States alone, the human impact of this disease is staggering. Bransfield et al
      states that "If just 20% of the 560,000 recognized cases of ASD in the US can be
      prevented or more effectively treated, this could result in a savings of $358
      billion in addition to the incalculable human impact of this disease."

      The authors recognized the contributions of Charles Ray Jones, M.D. for decades
      of expertise and dedication in helping hundreds of children with Lyme
      Borreliosis and autism spectrum disorder.

      Parents needing more information on testing and treatment can turn to the LIA
      Foundation for support. They are a non-profit organization which focuses on
      research, awareness and education on the multiple infections, including
      Borrelia/Lyme Disease, and how that impacts children with Autism Spectrum Disorder.

      About Autism:
      Autism is a disorder that currently affects 1 out of 150 children. Boys are the
      majority of those affected. The numbers of autism cases spiked in the mid-late
      90's and continues to remain high. Most children do improve with some sort of
      biomedical and behavioral intervention.

      About Lyme Disease:
      Lyme disease is generally caused by a tick bite and can is more effective when
      antibiotics are administered soon after the infection. Borreliosis is a
      long-term infection that exists and can be undiagnosed Lyme disease or
      transmitted in some other way. Symptoms include achy joints, confusion, slurring
      words, word retrieval problems, brain fog, sensitivity to light and sound. Lyme
      disease in its late stage can be fatal, causing MS like symptoms and
      debilitating its victims. One of the disorders in which Lyme disease is known to
      mimic is autism spectrum disorder.

      About the LIA Foundation:
      The foundation was started in September 2006 by parents of children with autism
      and Lyme disease. Kathy Blanco of Beaverton, OR and Tami Duncan of Corona, CA
      are the founders. The foundation's goals are to provide awareness, education and
      research on the multiple-infections such as Borrelia and its connection to autism.
    • 09.11.07, 20:39
      Rapid Responses to:


      Alison Tonks
      Lyme wars
      BMJ 2007; 335: 910-912 [Full text]

      Rapid Responses published:

      Lyme Wars: Tackling the Testing. 5 November 2007
      Raphael B. Stricker, MD
      450 Sutter Street, Suite 1504, San Francisco, CA 94108,
      Lorraine Johnson

      Send response to journal:
      Re: Lyme Wars: Tackling the Testing.

      To the Editor:

      The generally balanced report by Alison Tonks about the "Lyme Wars" (3 November)
      fails to provide a balanced view of one issue: while the Centers for Disease
      Control and Prevention (CDC) warn practitioners about "various unvalidated
      tests", they fail to warn us about the Food and Drug Administration
      (FDA)-approved commercial tests for Lyme disease.

      The two-tier testing system endorsed by the CDC has a high specificity (99%),
      meaning that this approach yields few false- positives. But the tests have a
      uniformly miserable sensitivity (56%), meaning that they miss 88 out of every
      200 patients with Lyme disease (Table). By comparison, AIDS testing has a
      sensitivity of 99.5%, meaning that these tests miss only one out of every 200
      AIDS cases. In simple terms, the chance of a patient with Lyme disease being
      diagnosed using the FDA-approved and CDC-sanctioned commercial tests is about
      the same as a coin toss, and the poor test performance assures that many
      patients with Lyme disease will go undiagnosed.

      Until we scrap the worthless commercial tests for Lyme disease and find a better
      way to make the diagnosis of this protean illness, the "Lyme Wars" will continue

      Raphael B. Stricker, MD
      Past President, International Lyme & Associated Diseases Society, San Francisco,
      CA 94108

      Lorraine Johnson, JD, MBA
      Executive Director, California Lyme Disease Association, Los Angeles, CA 90068

      Sensitivity/Specificity of Commercial Two-Tier Testing
      for Lyme Disease

      Study/Year Sensitivity Specificity

      Schmitz et al, 1993 66% 100%

      Engstrom et al, 1995 55% 96%

      Ledue et al, 1996 50% 100%

      Trevejo et al, 1999 29% 100%

      Nowakowski et al, 2001 66% 99%

      Bacon et al, 2003 68% 99%

      MEAN TOTAL 56% 99%

      1. Schmitz et al. Eur J Clin Microbiol Infect Dis. 1993;12:419-24.

      2. Engstrom et al. J Clin Microbiol. 1995;33:419-27.

      3. Ledue et al. J Clin Microbiol. 1996;34:2343-50.

      4. Trevejo et al. J Infect Dis. 1999;179:931-8.

      5. Nowakowski et al. Clin Infect Dis. 2001;33:2023-7.

      6. Bacon et al. J Infect Dis. 2003;187:1187-99.

      Competing interests: RBS serves on the advisory panel for QMedRx Inc.
      Lyme Disease is not a simple infection 7 November 2007
    • 17.11.07, 02:36
      W materialach dla lekarzy jest odpowiedz Dr Jemseka na agresywny artykul IDSY w
      Poniezej zamieszczam inny list w protescie, napisany przez psychiatre, ktory
      widzi duzo pacjentow z borelioza bo tam wysylaja mu ich zakaznicy.
      List nawoluje do podjecia pokojowych dyskusji, ale autor oprocz tego wyraznie w
      nim pisze, ze pacjenci majacy zaburzenia psychiczne spowodowane borelioza nie
      odpowiadaja na typowe leczenie psychiatryczne, natomiast prawie zawsze jest
      widoczna poprawa po wielomiesiecznym leczeniu abx. Czesto te poprawe mozna
      uwidocznic rezonansem i innymi badaniami mozgu.
      As a psychiatrist in a lyme endemic area, I have evaluated
      numerous patients with complaints related to lyme disease,
      many of whom have had symptoms that persisted for months to
      years, and many of whom report the onset temporally related to
      a tick bite they received which was either untreated or treated
      with a short term course of antibiotic medicine. As a
      psychiatrist, and not expert in infectious disease, I do not
      diagnose or prescribe antibiotic treatment for lyme or related
      diseases, but rather refer to other physicians.

      I have responded to the complaints of these patients by
      providing symptomatic relief for the neuropsychiatric
      manifestations of their illness and by referring them in some
      cases to physicians who prescribed long term antibiotic therapy,
      dismissed in the review article as "self proclaimed lyme literate
      physicians." Since I have been aware of the great lyme
      controversy, I have followed with great interest the medical,
      financial and political interests surrounding lyme treatment and
      read with great interest the current review which provides an
      excellent summary of the position of physicians on one side of
      the current debate.

      As a psychiatrist, I could not avoid notice of the defensive
      posture taken by the authors, and for good reason. Any
      physician who now opposes long term antibiotic therapy for
      lyme or related illness will, as stated, fall under attack by large
      numbers of patients, support groups and internet sites who
      believe that they have a tick bite related illness which requires
      treatment these physicians wish to deny them.

      While I appreciate the review writer's dilemma, medical treatment
      must remain grounded in evidence. Part of that evidence, as
      relates to lyme disease, is that there is not yet a definitive
      diagnostic test, and there are no definitive treatments known to
      ease the suffering of those patients whose complaints, with
      varying degrees of merit, involve persistent symptoms
      compatible with tick borne illness. With regard to diagnosis, the
      experience reported by many patients who consult with
      mainstream doctors is that they are told, as detailed in the
      review, "You do not have lyme disease." The personal, or
      psychiatric, effect this has is to make patients feel hopeless,
      since the implication is that either they are faking symptoms, are
      consigned to live forever impaired or are mentally disturbed. It is
      the latter which brings them into my purview.

      I am not a researcher and what I report may be dismissed as
      "anecdotal," but anecdotes and offhand observations have led
      to some important medical discoveries. I have observed that
      many patients with a history of limited early treatment for tick
      bites using ten days to three weeks of antibiotic treatment do
      not respond to conventional psychiatric treatments for
      apparently conventional psychiatric illnesses with the same rigor
      or consistency as patients without such history.

      • 17.11.07, 02:36
        While I cannot explain this, I am certain of my observations. One
        is that some of my patients with apparent psychiatric illnesses
        including depression, fatigue, sleep disturbance, obsessive
        compulsive disorder and psychosis who had a history of tick
        bite treatment, and who failed to improve sufficiently with
        conventional treatment, responded well after receiving treatment
        with antibiotics ranging up to eight months, in some cases with
        cessation of all psychiatric symptoms. In several, symptomatic
        improvement paralleled SPECT scan results showing reversal of
        diffuse cerebral hypoperfusion in conjunction with long term
        antibiotic treatment.

        Regarding terminology, it is of little interest to me whether the
        symptom complex described is referred to as "chronic," "post
        lyme," "fibromyalgia," etc. My interest is in helping those who
        come in sick or disabled. Whether the persistent symptoms are
        theoretically related to syphilus or any other infectious disease
        is a matter for the scientists. The energy and resources spent
        fighting over these matters is not well spent. I am disturbed to
        see the NEJM weigh in so heavily on one side of this controversy
        and hope that the current review will represent the beginning of
        a scientific dialog about this increasingly prominent illness.

        As an interested observer of the lyme controversy, I have seen
        the abundance of "scientific" studies supporting both sides of
        the lyme controversy, and, as I read the review, began
        formulating what I believe will be some of the responses from
        the "lyme literate" community, who now must defend their
        treatment practices.

        While honest and dedicated physicians reside in both camps, I
        am deeply disturbed by the tenor of the debate and wish to issue
        a plea to all parties, consisting of two suggestions: First, stop
        attacking the integrity, experience and motives of fellow
        physicians and second, until evidence becomes incontrovertible,
        better tests and treatments developed and a consensus
        established, permit fellow physicians to treat this illness in
        accord with their best knowledge and experience without

        RB, MD
    • 20.11.07, 16:12
      .. i to pomimo leczenia w USA u znanych LLMD

      To pisano o nim rok temu (jeszcze calkiem niedawno byl czynnym sportowcem)

      Stars turn out for Gregory
      Mike Gregory
      Gregory is battling Lyme Disease Borreliosis
      More than 5,000 fans turned up at Wigan St Pat's amateur rugby league club for a
      testimonial match to raise money for rugby league legend Mike Gregory.

      The former Warrington and Great Britain captain is battling a muscle wasting
      disease which has left him confined to a wheelchair.

      The match was contested by a team of Wigan legends versus a select team from St
      Pat's, one of Gregory's former clubs.

      Turning out for the Wigan team were ex-Great Britain stars Andy Farrell, Andy
      Gregory and Jonathan Davies.

      Henry Paul, Brett Dallas and Bobbie Goulding also played to show their support
      for Gregory.

      A game of touch, the brainwave of former Wigan great Joe Lydon, ended in a
      spirited draw.

      The event raised over £25,000 for Gregory as he battles Lyme Disease
      Borreliosis, a tick-borne disease that blocks signals from the brain getting to
      • 20.11.07, 16:15
        The Times
        November 20, 2007

        Game mourns death of great after Mike Gregory loses his battle

        Mike Gregory, the former Great Britain captain and Wigan Warriors coach, died
        yesterday after a prolonged battle with a neurological condition that had
        rendered him wheelchair-bound for the past year. He was 43 and leaves a wife and
        two young sons.

        “Anyone who played with him, against him, or watched him play would have
        respected Mike for his courage,” Joe Lydon, his former Britain teammate and best
        man at his wedding, said. “He brought that same courage to his fight against an
        appalling illness.”

        Gregory’s wife, Erica, a biochemist, traced his condition – progressive muscular
        atrophy, a form of motor neuron disease – to a tic bite suffered while coaching
        the Britain academy squad in Australia in 2003 and the subsequent contraction of
        an infection known as borrelia, the causative agent of Lyme Disease. His illness
        forced him to give up the Wigan job after he had steered them to the 2004
        Challenge Cup final and Grand Final the previous season.

        His death brought an outpouring of grief last night from a sport in which he
        excelled as a fearsomely competitive player and a highly motivated coach. He was
        spoken of as a potential future coach of his country, whom he led to series
        victories over New Zealand in 1989 and 1990 during 20 international appearances,
        nine as captain.

        Shaun Edwards, who went to school with Gregory in Wigan and played alongside him
        for Britain, said: “On the pitch, he was a warrior. Off it, he was full of life,
        full of fun. As a coach, he was a guy who cared deeply for his players. It was
        heartbreaking to see him suffer recently. There have been a lot of [fundraising]
        events, which showed how much people thought of Mike.”

        Although born in Wigan, Gregory spent virtually all of his playing career at
        Warrington, where a book of condolences has been opened, as the backbone of the
        side at loose forward for 12 seasons. He captained the team at Wembley in the
        1990 Challenge Cup final defeat by Wigan, who had tried in vain to sign him in 1988.

        If loyalty was one of his strengths, so was the stubbornness that came to define
        his latter years. He was assistant coach to Wales in the 1995 World Cup while
        pursuing a fruitless attempt to defy a knee injury that eventually ended his
        career after 18 appearances for Salford at the age of 31.

        He began the Super League era in 1996 as assistant coach to Shaun McRae at St
        Helens. He then coached Swinton before moving to Wigan, initially as academy
        coach and then as assistant to Stuart Raper, whom he succeeded in July 2003 to
        take over what he referred to as his “dream job”.

        Gregory was aware of the seriousness of his condition only when he collapsed
        during the week of the 2003 Grand Final. His last game in charge of Wigan was
        the Challenge Cup final in Cardiff the next May, after which he stood down to
        have treatment in the United States, which failed to halt the remorselessness of
        his debilitating condition.
    • 30.11.07, 06:10
      Oskarzyciele wyznaczyli dzien 18 grudnia jako termin wydania wyroku.
      Propozycja jest taka aby ukarac Dr Jonesa kara $10000 oraz postawic warunki na
      jakich moze on dalej praktykowac medycyne.
      Przewiduje sie, ze bedzie on musial kwartalnie przedstawiac historie choroby
      wszystkich swoich biezacych pacjentow innemu lekarzowi i bedzie musial zaplacic
      za jego czas. Jezeli wynikna dalsze problemy to utraci on licencje.
      Artykul konczy sie opisem radosci lokalnego szefa reumatologii, ze wydany wyrok
      wysle klarowna wiadomosc dla innych lekarzy ILADS.

      Wyrok moze jeszcze ulec zmianie.

      By WILLIAM HATHAWAY | Courant Staff Writer
      7:41 PM EST, November 29, 2007

      In a decision with national implications for how suspected cases of Lyme Disease
      are treated, a state physician review panel is recommending that controversial
      pediatrician Charles Ray Jones be reprimanded and put on two years' probation
      for his diagnosis and treatment of two Nevada children.

      If the panel's recommendation is upheld next month, the New Haven area
      pediatrician -- who gained support across the nation because of his willingness
      to ignore consensus treatment guidelines and prescribe long-term antibiotics to
      children suffering symptoms of Lyme -- would also have to pay a $10,000 fine and
      pay a doctor to review records of his patients.

      The decision, in criticizing Jones, could have broad implications. It calls into
      question the medical validity of treating patients who show symptoms of Lyme
      Disease -- such as aching joints and fatigue -- but don't meet the criteria
      established by mainstream doctors.

      Proposed Memorandum Of Decision
      Lyme Disease Links
      Lyme Disease Rates For 2006 Multimedia
      Advocates for patients who say they have chronic Lyme Disease argue those
      criteria are too narrow and lead to needless suffering.

      But the panel from the Connecticut Medical Examining Board upheld most, though
      not all, of the state health department's allegations about Jones' diagnosis and
      treatment of two Nevada children in 2004 and 2005, which came into question
      during a bitter custody dispute.

      Jones prescribed antibiotics to the son of Jeffrey and Robin Sparks and told the
      boy's school principal that he had diagnosed late-stage Lyme Disease without
      ever having seen the boy, the panel found.

      Jones also prescribed antibiotics to the Sparks' daughter before examining her.

      When Jones finally did see the Sparks' children, he persisted in his diagnosis
      of Lyme Disease for children without compelling medical evidence to support his
      diagnosis, the three-member panel found.

      "The respondent diagnosed a disease when the exposure risk was extremely low,
      medical history was non-specific, the signs and symptoms were non-specific, and
      the laboratory tests were negative,'' the panel found.

      Jones defended his actions, saying he has successfully treated thousands of
      patients suffering from Lyme Disease.

      The panel's finding, which will be reviewed next month by the full board, goes
      to the heart of bitter feud over Lyme Disease.

      The majority of medical experts say there is little evidence to support the idea
      that Lyme Disease, if treated properly, will nonetheless continue to cause
      ongoing symptoms, a view that has been bolstered by the treatment guidelines
      issued by two medical associations for the disease.

      There is no good evidence, these doctors say, that extended courses of
      antibiotics have long-term benefits for patients suffering from Lyme-like
      symptoms. And symptoms experienced by these patients are more likely
      attributable to causes other than a lingering infection from the tick-borne

      But advocates for Lyme patients insist there is abundant evidence that the
      bacterium which causes Lyme can persist for years, even after initial antibiotic
      treatment and often eludes detection by existing tests. They believe that
      thousands suffer needlessly because their doctors do not recognize clinical
      signs of Lyme and refuse to prescribe long courses of antibiotics. Members of
      the so-called long-term Lyme camp crowded Jones' hearings, which lasted more
      than a year, in support of the doctor. They raised money to aid in his defense.

      "Dr. Jones is being charged with improperly diagnosing and treating Lyme Disease
      after having treated and cured two children whose health was of great concern to
      their mother for years,'' said Jones' attorney, Elliot Pollack. "Instead of
      being sanctioned, he should be complimented.''

      Jones treated three of Maggie Shaw's children for Lyme Disease and all got
      better, the Newtown mother said.

      "My concern is not only for my kids, but how will this effect treatment for all
      children,'' Shaw said.On the other side of the divide, the decision was
      well-received by the doctors who argue that treating patients with Lyme-like
      symptoms with long-term antibiotics is not only misguided, but can lead to a
      failure to properly diagnose other ailments in those patients.

      "This decision sends a message to very small cadre of physicians who do not
      conform to standards of care for diagnosing and treating Lyme Disease,'' said
      Dr. Lawrence Zemel, chief of rheumatology at Connecticut Children's Medical
      Center and professor of medicine at the University of Connecticut School of

      That view was bolstered by a recent review in the New England Journal of Medicine.

      In addition to the fines and probation, the panel is recommending Jones hire a
      doctor to review his treatment regimens quarterly while he is on probation.
      Future misconduct could lead to a suspension of his license.

      The full board is scheduled to review the findings on Dec. 18. They can confirm,
      reject or modify the findings of the panel.
    • 13.12.07, 21:15
      Nowy artykul Pameli Weintraub tym razem bedacy rodzajem medycznej biografii Dr
      „Choc wielu tego jeszcze nie zauwaza, wiatr zmiany juz zaczal wiac” mowi m.in Dr
      Jones. Artykul opisuje, jak to od roku 2001 coraz wiecej lekarzy oficjalnie
      nalezacych do bloku IDSA, niekiedy piastujacych wysokie pozycje w medycznej
      hierarchii, ‘po kryjomu’ wysyla do Dr Jonesa swoich pacjentow zarazonych
      chorobami odkleszczowymi.

      Z roku na rok ilosc lekarzy po kryjomu sprzyjajacych ILADS dramatycznie narasta.


      One of the great humanitarian physicians, Charles Ray Jones is a
      medical maverick who bucks the establishment to treat tick-borne disease in the
      shadows of Yale.

      By Pamela Weintraub

      On crisp fall mornings and warm spring evenings, tourists to New Haven
      crowd the intersection of Broadway and Park. There, by the century-old
      gothic Christ Church, they steep in a brew of academic cool and
      kitsch. Students wander the streets clutching cups of Starbucks
      coffee, stopping to chat on benches or browse for books, designer
      jewelry and clothes. The Campus Clothing Company sells Yale
      University tee-shirts, caps, and mugs to gloating parents while
      students themselves don wardrobes from the Urban Outfitters down the
      street. It is only in downtown New Haven that a generic Barnes and
      Noble could have the chutzpah to call itself "The Yale Bookstore," or
      that casual food joints push the envelope with names like the Educated
      Burgher and the Ivy Noodle.

      • 13.12.07, 21:16
        Walk a few blocks East, and you'll find the source of all the haute and hype:
        Yale itself, home to the bright hopes and dreams of the well-heeled or simply
        brilliant, one of the most beautiful and august universities in the world. Ace
        your high school years with a 4.0 grade point average and 1600 SATs, and you
        might get to New Haven, too.

        But there is another, less illustrious route to New Haven, one requiring no
        academic credential save from the school of hard knocks.

        Just follow Park Street back past Christ Church, alongside the filling stations
        and Laundromats, the dilapidated deli storefronts and the children hanging on
        stoops. There, in the shadows of the Yale-New Haven Medical Center, in a
        seen-better-days building more notable for its Seventies-style blandness than
        ivy along the wall, is the first floor office of Charles Ray Jones. Today, at
        73, Jones has, by default, become the sole U.S. pediatrician specializing in the
        long-term antibiotic treatment of the disease called "chronic Lyme."

        Often that term is a misnomer, Jones states. The chronic Lyme disease spectrum
        includes not just Borrelia burgdorferi, the bacterial infection known to cause
        Lyme disease, but a host of other tick-borne germs. At the top of Jones' list
        for these co-infections are human granulocytic ehrlichiosis, a rickettsial
        illness, bartonella, a
        bacterial disease known to gravitate to the brain and central nervous system,
        and babesiosis, caused by malaria-like protozoa that live in the blood.

        "The children and adolescents who get sickest, and who are hardest to treat,"
        says Jones, "usually have an immune genetic marker associated with arthritis and
        more severe disease, or one of the co-infections along with Lyme disease."

        As far as Jones is concerned, moreover, children and teenagers treated
        appropriately usually kick the disease altogether -no matter how sick they may
        be when they walk through his door. "When it comes to children, at least," says
        Jones, "the word chronic usually does not turn out to be correct. Because we
        find that children, when diagnosed with the correct infections and treated with
        the appropriate
        medication, do get well."

        • 13.12.07, 21:18
          It is the hopeful attitude and the accolades of grateful parents that keep Jones
          out of retirement -10 hours a day, seven days a week.

          Those first visiting the pediatrician may be surprised by the low-key office,
          hunkered, incongruously, at the end of a long, narrow, dimly lighted hall. The
          windowless waiting room is Norman Rockwell-friendly, boasting a selection of
          gentle watercolors and a Little Tikes Country Kitchen as well as countless books.

          His suite --including a few exam rooms and an alcove for blood work-- also
          contains a darkened space with couch, blanket, and VCR for kids too cold, light
          sensitive, or exhausted to wait out front.

          But nothing prepares novice patients for the entry of Jones himself: Making sure to
          greet each child individually, he typically wears a running suit (acrylic,)
          trifocal lenses that glaze his eyes, and a spirited, whimsical grin. Limping
          from old athletic injuries, Jones nonetheless manages to sit the smaller
          children on his knee and produce a stream of wacky jokes.

          Pay too much heed to first impressions, though, and you'll miss the substance
          beneath. Jones will have read the complete medical history of each new patient
          --usually dozens of hard-luck pages-- and can recite chapter and verse on the
          child's sequence of symptoms, diagnoses, treatments, and previous lab results.
          Jones' version of the first exam is a two-hour marathon, in which blood is
          drawn, a detailed history taken, and every inch of the child evaluated.

          While most physicians considering Lyme look for a rash and sore knees, decades
          of treating the most intractable cases on the planet have taught Jones to recognize
          the more subtle fingerprints of disease.

          He knows how to seek out over-heated ears, a pain (upon pressure) in the bones
          and joints of the chest, and the tell-tale sluggishness of a sick child's gait.

          Benefiting from this accumulated knowledge and meticulous attention to detail
          are literally thousands of children and parents --arriving daily at Jones homey
          office from around the US and the world.

          • 13.12.07, 21:19
            It was in March of 2000 that Elizabeth Stone (not her real name) of northern
            Westchester county, New York, finally left her job to hunt, full time, for
            treatment for her 16-year-old son's "mystery" disease.

            Resident of a community at the epicenter of Lyme disease reports, with a house
            abutting a rare spruce forest filled with deer, Stone had first observed a
            strange, mottled rash on her son's torso in October of 1998.

            She called her pediatrician, a member of the largest and most respected medical
            group in her part of the county, asking whether she should come in.
            "No, don't bother," she was told. In the months that followed the boy proceeded
            to develop a host of disturbing symptoms: first a severe flu-like illness, then
            aches in his knees and elbows, finally, an unremitting migraine and marked
            nausea that never went away.

            Though Stone requested the doctor perform a Lyme disease test, he insisted the
            symptoms, in aggregate, were too broad and vague to suggest something like Lyme.

            As Stone traveled from specialist to specialist, including rheumatologists and
            infectious disease experts at the major teaching hospitals of Manhattan, she was
            given a variety of diagnoses questionable diagnoses from depression and stress
            to Parvo virus to unending, unrelenting "flu."

            Stone was fortunate in that her son's psychiatrist, a renowned expert in his own
            right, did not buy the 'psychiatric' diagnosis favored by the pediatrician or
            the neurologist brought on board.

            Responding to the psychiatrist's demand for more lab work, the primary care
            pediatrician, finally, reluctantly, drew 14 vials of blood. "We are testing for
            every disorder possible, just to make you feel better, even though there's
            nothing wrong," he told Stone at the time.

            But when a Western Blot test revealed 8 positive antibody bands for Lyme disease
            -- the Centers for Disease Control and Prevention (CDC) requires 5-- the
            pediatrician still refused to concede Lyme disease was the cause.

            Instead, he sent her son on to yet another referral, this time the head of
            infectious disease at an area hospital.

            That doctor, well known in the community for his view that Lyme was
            overdiagnosed, nonetheless agreed Stone's son had slipped through the cracks.
            • 13.12.07, 21:20
              The boy had been infected for a year or two, the doctor said, and prescribed
              four weeks of intravenous Rocephin to treat what he said was now a neurological

              But when, at the end of the month, the teenager was sicker than ever, that
              doctor pulled back, too. There was nothing more he could do for the boy, he said
              -if the treatment hadn't worked, if the boy was still sick, whatever it was, it
              wasn't Lyme.

              He now tended to the psychiatric explanation, too. But what psychic switch had
              prevented this former basketball impresario and straight A student from standing
              or even sitting up in bed; from focusing enough to read a paragraph, let alone a
              page? What caused him to writhe in pain whenever anyone jostled him, to demand
              near-darkness to open his eyes, or to appear so contorted he might have been
              struck by a speeding Mack truck?

              These were the issues Stone was grappling with when the leader of a local
              support group steered her son to Jones. "Dr. Jones tested my son not just for
              Lyme, but for other tick-borne infections, including ehrlichia and babesia," she

              "When the results came back, Jones called to tell her the boy was positive for
              all three. Instead of using more aggressive intravenous treatments, as the
              mainstream had done, Jones used low-dose combinations of targeted medications:
              doxycycline to treat the Lyme and ehrlichia, and Mepron for the babesia.

              "Within two weeks my boy had gotten off the couch and was throwing a basketball
              in our family room," says Stone. A year later, he was well.

              "Had we listened to our pediatrician and the local Lyme disease expert," she
              says, "we might have stuffed him full of psychoactive medications unable to
              address the disease.

              • 13.12.07, 21:22
                It would have been tantamount to locking him up and throwing away the key."
                Instead, her son is once more a straight A honors student on the high school
                basketball team, with hopes of attending college in the Ivy League.

                More harrowing is the story told by Kay Lyon, a mother from Wenham, MA, who
                describes the decline of her daughter until, in the summer of 1998, she was
                locked in a pediatric psychiatric unit for three-and-a-half weeks. She had just
                turned nine. "She was paranoid, delusional, psychotic, suicidal, homicidal, and
                having visual hallucinations while partially blind," Lyon explains.

                "She suffered severe confusion, and pain in large and small joints. Because she
                could not attend public school she was placed in a 'behavioral program,' where
                she was
                physically restrained and put in solitary confinement almost daily for three months.

                There she cried, fought with her very real ogres, screamed, beat on the mat
                which was used to contain her, and finally would curl up in a fetal ball on the
                cold floor in the corner and sob.

                My husband found her in this 'room' one day and removed her from the 'school'
                immediately. She then spent three months at home with no schooling available for
                her at all."

                Saddled with numerous diagnoses, including bipolar disorder, attention deficit
                disorder, schizophrenia, possible schizophrenia, anxiety disorder, and tentative
                mitochondrial disease, the child was kept in check through psychoactive drugs
                like Lithium, Risperdal, Tegretol,Topamax, and Klonapin, which caused the gain
                of massive amounts of weight and kept her brain in a fog.

                Lyon was frantic. The child's IQ had dropped 45 points in six months, and a scan
                with magnetic resonance imaging (MRI) revealed multiple lesions throughout the
                brain, predominately in the frontal lobes.

                "Our child was a patient of 16 doctors," says Lyon, and "none knew what was wrong."

                Desperately searching the Internet for any clue to help, Lyon worked backward
                from the list of symptoms, and one condition stood out as encompassing all of
                them: Lyme disease.
                • 13.12.07, 21:23
                  "Despite this discovery, " she says, "it took four months until I could find a
                  doctor willing to diagnose and treat her for this disease. Most refused to even
                  run a Lyme disease test.

                  Then, Lyon found Jones." The doctor tested the
                  child, finding not just Lyme disease, but also the co-infections babesia and
                  ehrlichia. A little more than two years later, Three years later, treated with
                  long-term oral antibiotics, the child has made a near-miraculous recovery.

                  She is now in a normal sixth grader and, according to her mother, "she even has

                  "Dr. Jones is an angel, a living saint," Lyon says to anyone who will listen.
                  "We owe him our lives."

                  Renegade Medicine

                  These difficult cases and the long-term antibiotic treatments Jones employs to
                  deal with them have made him a maverick, reviled by establishment physicians who
                  hold that Lyme disease is simple, marked by a circumscribed group of symptoms
                  and treatable with four weeks of antibiotic therapy, eight at the outside most.

                  "I know what they say about me behind my back," Jones states.

                  "I am highly criticized, and constantly reported to licensing boards. People
                  call me a renegade, a charlatan, a Lyme guru. They say I have a way of
                  hypnotizing parents, that I am senile, or pre-Alzheimer's, not really a
                  pediatrician at all."

                  Yet Jones' simple lifestyle hardly smacks of the high-roller accouterments one
                  associates with gurus. His two "vacations" this year-included trips to Guatemala
                  to help his daughter adopt a toddler, Julian.

                  To accommodate his arthritis and other disabilities, and to keep costs down,
                  Jones has, since the death of his wife seven years ago, lived in an apartment
                  above his office, in the same nondescript building he spends his days.

                  "When he goes upstairs he opens a can of tuna or even Spam, and that's his
                  dinner," says one close colleague who will not be named.

                  Despite critics' contention that Jones diagnoses everything as Lyme disease,
                  far-flung interviews with patients reveal the opposite to be true.

                  One mother, for instance, arrived at Jones office after another doctor ascribed
                  her son's severe gastrointestinal distress to Lyme disease. "Jones was
                  skeptical," she says, "and insisted we find our own pediatric gastroenterologist
                  without any particular knowledge of Lyme disease."
                  • 13.12.07, 21:24
                    The doctor the family consulted, an expert at Mt. Sinai Medical Center in New
                    York City, treated the child with weeks of laxatives, resolving the problem and
                    concurring with Dr. Jones -the cause of the distress was not, in fact, Lyme

                    Another parent arrived when her 13 year-old seemed to have a relapse of his Lyme
                    disease symptoms. Local pediatricians tested him and,
                    finding the serology negative, refused to treat the child and sent him on his way.

                    The mother expected Jones to ignore those test results and prescribe antibiotics
                    nonetheless. That was not the case. Jones sent out for more extensive tests,
                    including DNA analysis by polymerase chain reaction (PCR.)

                    This time the child did not have Lyme disease but, rather, bartonella, one of
                    the co-infections.

                    Based on the latest peer-reviewed literature showing the antibiotic, zithromax,
                    to be of use, Jones prescribed a short, low-dose course of that medication. In
                    two weeks the boy was well.

                    While costs for visits to Jones seem high, it's hard to believe the accusation
                    that he is driven by greed.

                    In a world of cookie cutter medicine defined by insurance company formularies
                    and rigid standards of care, Jones not only spends hours with individual
                    patients, he also treats many at discount, and some for free.

                    In a sense, says Jones, the fees of those who can afford it subsidize the
                    treatment for those who cannot. "How can I send them away," the doctor says,
                    "when I understand the consequences to a child of that act?"

                    Medical Ministry

                    If Charles Ray Jones seems the quintessential humanist to parents, it is because
                    he has been training for years.

                    A first year student at Boston University's Divinity School in 1954, Jones was
                    drawn to the institution's commitment to activism and openness.

                    Along with Martin Luther King, Jr., his classmate and friend, he attended weekly
                    meetings with Jewish students from Hillel and learned the value of a world
                    community and civil rights.
                  • 13.12.07, 21:25
                    But a twist of fate would cause Jones to seek his ministry in medicine, not the

                    "The divinity school was very much oriented toward social action," Jones
                    explains. "One afternoon a week we went around to see people who had requested a
                    ministerial visit.

                    One day it fell to me to visit a woman of perhaps 80, a person very much alone not
                    by desire but by default. I found a superbright individual in a body withered by
                    rheumatoid arthritis, reflecting on the past.

                    She came up to me, grabbed my hand, and said, 'help me in a real way.' But as a
                    divinity student, I couldn't provide the help she truly needed -medical help.

                    That's when I decided to have a different kind of ministry, a medical ministry.
                    I felt that was the way I could contribute best."

                    Later drafted into the Army, Jones managed both his passions with aplomb. He
                    secretly left base to march for civil rights with his friend, Martin, even at
                    risk of court martial.

                    And he spent his evenings at Georgia State and Emory University taking courses
                    in pre-med. By the time Jones was discharged from the service he'd married his
                    college sweetheart, Margery, and had a letter of admittance to New York Medical
                    College in New York City. It was 1958, and he was 29.

                    A natural, Jones was not only president of his medical school class, with a
                    coveted position researching collagen diseases in the school's biochemistry lab,
                    but also recipient of an Arthritis Foundation scholarship and prestigious awards
                    from Merck and Hoffman LaRoche.

                    Upon graduation he became resident, and eventually, chief resident, at St.
                    Luke's Hospital in Manhattan. With an interest in pediatrics as well as
                    research, it made sense that Jones would be attracted to the hot field of the
                    day -oncology-- at the top institution of its kind, Memorial Sloane Kettering
                    Cancer Center, in New York.

                    Doing research at the biomedical juggernaut, it didn't take long for Jones to
                    become world authority on an obscure but confounding disease most Lyme patients
                    have never heard of -Langerhans cell granulomatosis, characterized by lesions in
                    bone and soft tissue.

                    While physicians of the day were treating the condition with whole-body
                    radiation, it was Jones --today, ironically, accused of overtreating disease--
                    who rang the alarm bell that aggressive therapy was far worse than the condition
                    • 13.12.07, 21:26
                      The problem, Jones found, was an entrenched system of classification identifying
                      Langerhans cell granulomatosis as the first stage of an increasingly dangerous
                      disease spectrum, culminating in a deadly proliferation of the body's immune cells.

                      Working with colleague and fellow-physician Philip Lieberman, the longtime chief
                      of surgical pathology at Memorial, only recently retired, Jones found that
                      Langerhans cell granulomatosis was not malignant, not especially dangerous, and
                      apparently unrelated to the disease spectrum with which it had been linked.

                      Instead, precipitated by toxins or other environmental insults, Langerhans cell
                      granulomatosis was an immune response that could be controlled with low-dose
                      medication, including .methotrexate and corticosteroid.

                      "The most common complication of the disease," Jones said, "came from the side
                      effects of over-treatment itself."

                      Though Jones' treatment for Langerhans cell granulomatosis today forms the
                      standard of care in peer-reviewed journals, it made him a lightning rod for
                      controversy at the time.

                      Then, as now, the doctor was unfazed by the disdain of colleagues. But as his
                      family grew, there were other concerns. Waking up at 5 AM each morning to see
                      patients at the hospital, he also conducted ongoing studies at Memorial and
                      tended to a busy private practice in offices on both the East and West sides of

                      He rarely arrived home before 10 PM. "Margery and I thought there must be
                      another way," Jones states.

                      So in 1968, pushing age 40, he packed his bags and his family and headed north
                      --to take over a booming pediatric practice in the bucolic Connecticut town of
                      Hamden, where he hoped for a saner, more manageable life.

                      Little did Jones realize he had purchased not a country paradise, but a
                      residence in the whirlwind, at the epicenter of what would become one of the
                      most bitter medical controversies of the century, the battle over Lyme disease.

                      • 13.12.07, 21:27
                        Children of Hamden, Children of Lyme

                        While Jones was settling into his new life as Hamden's gentleman country doctor,
                        an artist and mother an hour north on the Interstate, in the tiny, wooded
                        Connecticut hamlet of Lyme, was doing some work of her own.

                        Afflicted with odd rashes, fevers, and joint pain, the woman, Polly Murray, had
                        begun to notice the symptoms in others -in her husband, her children, and many
                        of their friends.

                        Like the pioneering environmentalist, Lois Gibbs, who documented disease
                        clusters at Niagara Falls' Love Canal, Murray set out to prove the existence of
                        a disease cluster in Lyme.

                        Going from house to house collecting evidence
                        from neighbors and friends, Murray irked the likes of real estate agents and
                        business leaders, but with her children and their friends so stricken, and
                        eventually disabled, she pressed on.

                        At the time barely aware of Murray's project, or even the clustered children,
                        the country doctor from Hamden faced a dilemma as well: A new form of juvenile
                        arthritis had mysteriously appeared in and around Hamden, where it struck young
                        patients with disturbing regularity.

                        "It didn't have the deforming characteristics I thought of as rheumatoid
                        arthritis," Jones now says. "I didn't know exactly what it was." But
                        even without a name or suspected cause for the disease, Jones quickly stumbled
                        upon an apparent cure.

                        "By coincidence," he says, " a few of the children with this strange condition
                        also came down with strep. I treated the strep with antibiotics, and in those
                        children, only, the 'arthritis' went away, too."

                        Though the disease remained unexplained, Jones' clinical strategy could not be
                        more clear: He would track his charges, recognizing 'arthritic' symptoms early
                        in the game, and then treat with a week or two of antibiotics, strep or not. "It
                        seemed to me that on 10-14 days of medication,"

                        Jones now recalls, "they all got well."

                        Clearly, he reckoned, he was dealing with an infection. And from the nature of
                        its presentation, he theorized it was transmitted by some sort of insect -in
                        other words, vector-borne.
                      • 13.12.07, 21:28
                        While the children visiting Jones' practice in the town of Hamden got better,
                        their counterparts in the hamlet of Lyme, undiagnosed and untreated, had no such

                        By 1975 two of Murray's children had knees so swollen they could walk only with
                        crutches, and she finally managed to pique the interest of Connecticut's chief
                        epidemiologist, who sent an investigator --a rheumatology research fellow named
                        Allen Steere, recently arrived at Yale.

                        Trained for years as an epidemiologist at the CDC, Steere embraced the chance to
                        play medical detective again. Devoting himself to the task, he first proved the
                        disease clusters were bona fide and then traced them not to nuclear power plants
                        or toxic drinking water, as some residents suspected, but to the Ixodes
                        scapularis tick.

                        It was around that time, Jones recalls, that he happened to meet up with Steere
                        at the hospital while attending grand rounds and had the chance to chat. "It
                        forms a bittersweet memory in retrospect," Jones now says. "Steere was obviously
                        studying the same phenomenon I observed.

                        He thought the disease was spread by ticks, I thought mosquitoes or gnats. I
                        thought the infection was bacterial, based on the outcome in my practice, but he
                        thought not."

                        They would both be partially correct.

                        Publishing findings in 1977, Steere reported an illness called Lyme arthritis,
                        characterized by "recurrent attacks of asymmetric swelling and pain in a few
                        large joints, especially the knee."

                        Attacks would last from a week to months with long periods of remission, Steere
                        added, and would typically recur. The precipitating event was a tick bite,
                        followed by the appearance of a red rash with central clearing -to the general
                        population, a bull's eye.

                        Later that year, in a second publication, Steere replaced the name, Lyme
                        arthritis, with Lyme disease. The reason, he wrote, was an "enlarging clinical

                        Studying 32 patients with the same symptoms of erythema migrans, or skin rash,
                        as well as arthritis found in the first study, he now recorded a host of other
                        symptoms: malaise, fatigue, chills and fever, headache, stiff neck, backache,
                        (muscle aches), nausea, vomiting, and sore throat.

                        • 13.12.07, 21:29
                          He recorded, as well, migratory joint pains, neurologic and cardiac
                          abnormalities, and elevated markers in the blood. The symptoms were so diverse,
                          in fact, that they could not be used, in and of themselves, to pinpoint Lyme
                          disease as the cause, Steere claimed.

                          "The diagnostic marker is the skin lesion," he instructed physicians. "Without
                          it, geographic clustering is the most important clue."

                          The main difference between the children of Lyme and the children of Hamden, as
                          Jones saw it in the wake of the publications, was that the children living in
                          Lyme were sicker, by far.

                          Thanks to careful tracking and early antibiotic treatment, Jones' regular
                          patients rarely developed advanced forms of the new illness.

                          The untreated children of Lyme, on the other hand, had became experiments of
                          nature: Without antibiotic treatment, their pathology and symptoms progressed to
                          the endpoint, beyond anything Jones himself had seen.

                          If Jones hadn't yet witnessed the severity of the illness it was because, on the
                          issue of bacterial infection and the consequent need for antibiotics, he'd been

                          His hunch was validated in 1981, when Dr. Willy Burgdorfer of the National
                          Institutes of Health's Rocky Mountain Laboratory first identified the
                          spirochetal bacteria that
                          cause Lyme disease.

                          Three years later, the bacterial species, Borrelia burgdorferi, was named for him.
                          With this evidence in hand, the doctors at Yale began to treat aggressively,
                          recalls Jones.

                          And thus, when his patients became especially ill, Jones sent them on to New
                          Haven. There, Yale's experts used heavy antibiotic artillery, including
                          intravenous treatments administered over the course of months, to beat back
                          symptoms of the disease.

                          "One child from my practice had Lyme meningitis, and the Yale physicians gave
                          her two months of IV antibiotics," Jones recalls.

                          "When she remained ill, they gave her two months more." For that particular
                          child, four months of treatment seemed to do the trick.
                        • 13.12.07, 21:30
                          Trading Places

                          But then, everything changed. As the eighties passed, the children coming to
                          Jones' practice presented with increasingly severe disease.

                          Often unrecognized and untreated by other physicians, they had progressed beyond
                          the initial, arthritic symptoms of his first patients, manifesting not only the
                          sweep of problems meticulously recorded by Steere, but many others as well. "I
                          found the disease could impact almost any organ of the body, or the whole body,
                          in systemic fashion," says Jones.

                          While many patients presented with rash and arthritis, of course, cognitive and
                          neurological symptoms were increasingly prevalent.

                          Some patients were blind, some so fatigued they could not sit or walk, and some
                          violent, or apparently autistic, or paralyzed by the sudden eruption of
                          obsessive compulsive disorder (OCD.)

                          Depending upon where the spirochetes gravitated in the body, and what particular
                          strain of bacteria was involved, presentation could be gastrointestinal,
                          neurological, cardiac, dermatological, arthritic, urological, ocular, or a
                          combination of these.

                          There might be just a single symptom, such as a severe, unending headache, or a
                          multitude of symptoms, so that a child's entire body was wracked by pain.

                          At first, Jones continued to treat these children with relatively short-term,
                          oral antibiotics until, one day, a teen-age patient with particularly severe
                          disease would cause him to change his mind.

                          Upon hearing his two weeks of medication had come to an end, the symptomatic
                          boy, then 15 but reportedly sick with Lyme since age 10, posed a question: "I'm
                          getting better, but I'm not well yet, so why not just keep giving me the pills?"

                          Why not, indeed, Jones reflected. He knew from experience, after all, that a
                          complete recovery could be elusive for such children. Often, their state of
                          wellness at the end of treatment was as good as it got; other times, in fact,
                          frequently, children relapsed.

                          The chance of side effects from continuing antibiotics, moreover, paled beside
                          the chance that the boy might actually be right -that continuing medication over
                          a longer time frame might help him continue his recovery. He was still getting
                          better on an almost-daily basis. Why stop now?

                          • 13.12.07, 21:32
                            Jones agreed to the little experiment, and the boy kept improving -week in and
                            week out. "It took three full years for the boy to become asymptomatic,"

                            Jones says, "but we stay in touch, and he has remained completely well" After
                            that, it became Jones' policy to treat not for an arbitrary number of days, but
                            rather, until symptoms were resolved, sometimes measured in weeks, sometimes
                            years. One child who came to his practice blind, he says, had his vision come
                            back "one piece at a time" for years. When, every so often, the parent of a
                            still-sick child requested the medication cease, Jones observed, the symptoms
                            that had resolved came back. "But if I treated until every last symptom was
                            gone, the child was cured."

                            Treating from the saddle through observation and empirical deduction, Jones
                            viewed Lyme as just a sideline during most of the 1980s.

                            "I still had my regular pediatric practice, and received, quite frequently,
                            referrals for patients with Langerhans cell granulomatosis,
                            my academic expertise."

                            But eventually, as more and more physicians and parents sent Lyme children his
                            way, the practice changed. "I was the country doctor on a tangent," he says, and
                            the tangent was Lyme.

                            As Jones and other physicians treating the sickest Lyme patients expanded their
                            treatment timeline and raised their dosages, as they combined antibiotics to
                            ward off drug resistance and fight a host of co-infections, academic researchers
                            pulled back.

                            One line in the sand, in 1993, was Allen Steere's publication, entitled "The
                            Overdiagnosis of Lyme Disease," in the prestigious Journal of the American
                            Medical Association. Steere didn't mention Jones specifically, but the
                            implication was clear: Jones and his ilk were sweeping too many people under the
                            Lyme disease umbrella, then treating with endless antibiotic therapy that just
                            did not work.

                            Another hit came from the Second National Conference on Lyme Disease Testing,
                            sponsored by the Association of State and Territorial Public Health Laboratory
                            Directors and the CDC in Dearborn, Michigan, in 1994.

                            Not only did the voting committee adopt a two-step testing standard that has
                            been called into question by a spectrum of experts, they also removed from the
                            second test -the Western blot-two markers known to be specific for Lyme disease,
                            and especially prevalent in late stage illness.

                            • 13.12.07, 21:33
                              Though the CDC said the Dearborn standard was for research and surveillance
                              purposes, only, it was, in practice, widely used to determine or reject the
                              diagnosis of Lyme disease.

                              As the icing on the cake, academic researchers publishing throughout the 1990s
                              held to increasingly restrictive treatment timelines ranging anywhere between 10
                              and 60 days.

                              Rejecting the notion that infection could survive the antibiotics, they said
                              that any symptoms remaining after treatment represented permanent damage, or
                              another disorder or disease.

                              In the year 2,000, when the Infectious Diseases Society of America came out with
                              treatment guidelines setting the short-term parameters in stone, physicians like
                              Jones found themselves blatantly bucking the authorities and in direct
                              opposition to the accepted standard of care.

                              With a new, more circumscribed disease definition and restrictive treatment
                              guidelines published in the peer-review, Jones and his colleagues were
                              increasingly vulnerable -not just marginalized, but now, openly attacked.

                              They were virtually expunged from the peer-review literature. Jones was removed
                              from the roster of medical insurance companies for treating too much Lyme
                              disease and these days, can accept no insurance at all.

                              In Oregon, in Michigan, in Texas, and recently, in New York, Lyme disease
                              doctors with aggressive treatment philosophies have been brought up on charges
                              of negligence or malpractice by state medical and ethics boards.

                              Jones himself, though protected in the state of Connecticut, has, on his desk at
                              any given time, a pile of official complaints made against him by doctors in
                              academic medicine.

                              Lyme Legacy

                              Addressing the challenges recently in front of patient and physician supporters
                              at a Lyme Disease Association meeting in Princeton, New Jersey, Jones spoke
                              openly, throwing down the gauntlet and galvanizing the crowd.

                              • 13.12.07, 21:34
                                "Children with Lyme disease must not become victims of hypocrisy," he said. "We
                                all know that children with a delay in diagnosis or inadequate therapy can be
                                difficult to treat.

                                No study has ever shown an optimum time for treatment, or that two to six weeks of
                                antibiotics always result in eradication of the bacteria or a cure.

                                But there is ample documentation in the peer-review literature that Borrelia
                                burgdorferi spirochetes can survive antibiotic treatment, for one to six months
                                or longer.

                                We know there are more than 300 strains of these bacteria, and that different
                                strains cause different symptoms and require different treatment strategies.

                                Persisting symptoms indicate persisting infection. Children with Lyme disease do
                                not have 'post-Lyme syndrome,' psychiatric disorder, or fibromyalgia.

                                They are infected with Borrelia burgdorferi, and they have Lyme disease."

                                Of course, it helps when preaching to the choir.

                                With his colleagues up on charges and facing potential extinction, is Charles
                                Ray Jones worried? Not really. "If I were younger, if I had children to support
                                or put through college, if my wife were still alive, I'd be scared as hell," he
                                says. "But here in Connecticut, the attorney general is enlightened, and most
                                complaints against me are thrown in the trash."

                                Besides, he contends, the winds of change are blowing, though most are unaware.

                                Starting the week the New England Journal of Medicine published a study
                                dismissing long-term treatment for chronic Lyme disease, in 2001, Jones says, he
                                has received a steady stream of calls and queries from physicians supposedly
                                ensconced on the "other side" of the fence.

                                Mostly infectious disease specialists from the very reaching hospitals known for
                                narrow diagnostic standards and restrictive treatment protocols, the callers
                                have expressed alarm at the swing of the pendulum over the troubled landscape of

                                The calls are secret, Jones says, the callers still "in the closet" when it
                                comes to Lyme and other tick-borne disease. Yet week after week for months now,
                                these "closet" practitioners have been sending sick children through New Haven's
                                back door, to a dim and narrow corridor and the homey, cavelike office of a
                                grandfather in a running suit, Charles Ray Jones. Blind and crippled, nauseous
                                and aching, unable to tolerate noise and light, to focus, or to effectively
                                learn, these young patients have been burdened with incurable diagnoses like
                                fibromyalgia and chronic fatigue syndrome.
                                • 13.12.07, 21:35
                                  Deemed untreatable, possibly psychotic, by family pediatricians and the high
                                  priests of academia, they are headed for the trash heap of throwaway children.
                                  -with one last-chance stop to see Jones. They continue to arrive despite his
                                  notoriety because, quite frankly, they have nowhere else to turn. But how long
                                  can a lone septuagenarian keep his finger in the dike? Can he do more -affect
                                  true change-by transmitting his knowledge to the world? Jones' decades of
                                  clinical experience have never been committed to writing or taught outside his
                                  small circle. And while he has the monopoly on a burgeoning market -Lyme disease
                                  in the U.S. is at an all-time high- he cannot find a young physician to work by
                                  his side full-time and commit to assuming his practice when he's gone. With his
                                  colleagues under investigation, their careers in peril, an heir may be hard to
                                  One ray of hope comes from the newly established Charles Ray Jones Endowed
                                  Student Fellowship at Columbia University, which allows him to train one medical
                                  intern in his practice each summer. In 2001, it was Megan Peimer, a second-year
                                  medical student at Columbia College of Physicians and Surgeons, who worked
                                  alongside Dr. Jones. Peimer, who also spent her time absorbing the peer-review
                                  literature on Lyme disease and writing up Jones' classic cases, says her hope is to
                                  foster a more rational attitude about tick-borne disease. "Lyme is a very
                                  complex entity," says Peimer, "and Dr. Jones is one of the only physicians I
                                  have seen or heard of to amass a clinical knowledge of it in terms of kids. He
                                  refuses to blanket his specific observations and individual patients with
                                  general pronouncements from journals, or to relinquish intellectual rigor to
                                  follow the crowd. He has a dedication to teasing out the etiology for each
                                  patient and situation, to synthesizing his knowledge and observations, and to
                                  treating based on hard facts." Will Peimer specialize in Lyme disease? "I'm
                                  devoted to international medicine," she says, "but when a child with Lyme
                                  disease comes to my practice, thanks to Dr. Jones, I will know how to
                                  recognize it, and I will know how to treat." Peimer believes the true value of
                                  the fellowship will be to spread Jones' knowledge wide, resulting not in the
                                  creation of one or two more Lyme disease physicians but rather, many physicians
                                  who understand Lyme disease. Jones is admired, as well, by other MDs treating
                                  patients with chronic tick-borne disease. "I have had the chance to observe him
                                  patients, and he's a highly astute clinician. The way in which he interacts with
                                  children is absolutely wonderful," says Kenneth Liegner, a physician from
                                  Armonk, NY. "Dr. Jones is an international treasure -- a courageous, selfless,
                                  inspirational, and outstandingly gifted clinician who has helped thousands of
                                  the most severely ill children with Lyme Disease from around the world to regain
                                  their health and their lives," says Brian Fallon, associate professor of
                                  clinical psychiatry and director of the
                                  Lyme Disease Research Center at Columbia University. "He embodies what we all
                                  wish for in a doctor and in a human being." Is Charles Ray Jones worried? Not at
                                  all. " I don't know everything," he says, "but when I have reason to know I am
                                  right in medicine or anything else, I will follow what I know." Defining himself
                                  as a warrior for his beliefs, Jones glances out the window of his ground level
                                  suite. "I am established enough to withstand the slings and arrows from across
                                  the way," he states. "Besides, I can sleep at night. I just hope for their sakes
                                  they are sincere in their stated belief that Lyme disease can always be treated
                                  short term," And then he is silent, as if issuing a prayer for their souls.
    • 23.01.08, 16:29
      W innym watku pisalem jak Kanadyjskie Stowarzyszenie Chorych wypuscilo notatke
      prasowa opisujaca, ze rzad nie chce ujawnic powodow dlaczego kanadyjskie testy
      na borelioze wychodza praktycznie zawsze ujemnie (w Kanadzie nie ma prywatnych
      laboratoriow, wiec jak wynik jest ujemny to powtarzac mozna wylacznie za
      granica). Jako powod podano, ze sa to informacje tajne dotyczace bezpieczenstwa

      Media podchwycily:
      National Security, Access to Information
      Canadian Government in denial about the toll Lyme Disease is taking on Canadians
      By Judi McLeod Wednesday, January 23, 2008

      Imagine the mental agony of being told by Canadian doctors that you do not have
      Lyme disease but having a diagnosis in hand from American doctors saying that
      you do.

      What do you then do if the Canadian federal government flatly denies your Access
      to Information request?

      That’s the medical dilemma of Gordon Anderson, who asks “What are we going to do?”

      And there are many other average Canadians asking the same question without
      getting the answers.

      Claiming that it is a matter of “national security”, the Canadian government
      insists that Canadians have no right to records that measure the ability of our
      national medical laboratory to detect “the fastest growing animal to human
      disease in the northern hemisphere”.

      It’s a worry you won’t find in media headlines, but a worry Canadians left in
      the dark about lyme must take to their beds every night.

      It’s not that the possibilities of coming down with Lyme Disease is remote. The
      possibilities of getting Lyme Disease originate from something that there is
      plenty of --the Great Canadian outdoors. Ticks that carry Lyme Disease can be
      found on your own front lawn, on your pets, on logs, in tall grass or common brush.

      The safest rule of thumb advises that if you are outside, do not brush up
      against tall grass or sit on logs.

      We all complain about bureaucratic red tape, but surely the denial of accurate
      health records is of the kind that hurts most.

      “The Canadian Lyme Disease Foundation decided they must find out how well our
      federal medical laboratory in Winnipeg does at detecting Lyme disease in
      humans,” said James Wilson, President of the Canadian Lyme Disease Foundation.

      Fully certified, proficiency tested and accredited laboratories in the U.S. have
      been finding that several thousand Canadians are actually positive for Lyme
      Disease after a negative Canadian test. Many of these Canadians had been given
      diagnoses ranging from multiple sclerosis, mental illness, to chronic fatigue
      • 23.01.08, 16:30
        But the successful outcome of Lyme disease treatment demands early diagnosis,
        so the Canadian Lyme Disease Foundation sought to find out why Canadian lab
        tests in so many instances are negative followed by a positive U.S. test. These
        patients only then get the treatment they need. The proof is in the pudding,
        they do remarkably well in recovery after having been left sick for years in
        many instances.

        Proficiency testing of laboratories measuring their ability to detect specific
        disease is required in most jurisdictions for laboratories to retain
        certification. The U.S. labs are proficiency tested and have excellent results.
        We expect similar results from our federal labs but we will never know if a
        small group of people who hold the lives of Canadians in their hands has their way.

        “If denying our request because of “national security” sounds absurd to you, it
        did to us as well,” says Wilson. “Something is going on. One provincial access
        to information request revealed minutes of a meeting involving provincial
        medical authorities and our federal laboratory representatives who discuss
        hundreds of unique cases of lyme disease in only a three-year period in that
        province. Officially, in that same three-year period the reported number of
        cases was zero.

        “We had also previously asked to be allowed to participate in proficiency
        testing of our Canadian labs but that request was quickly denied as well.

        “To put this in proper perspective, Canada has some of the highest rates in the
        world of diseases and conditions sharing the same symptomology as lyme disease
        but we have virtually no lyme disease, in stark contrast to every other northern
        hemisphere country. There are 1.5 million Canadians suffering from disease of
        unknown origin. Many of these mirror the symptoms of chronic lyme disease. We
        want to know how many are in fact lyme. We believe that number will prove to be
        substantial. It is implausible that Canada has protective border crossings that
        prevent birds that are carrying lyme disease from entering our country. It is
        much more plausible that we have many cases of lyme disease. Our cold
        temperatures do not account for our low numbers as previously stated by the
        government. Finland, a much colder country, has thousands more cases than Canada.

        “The best way to prove the prevalence of lyme in the bodies of Canadians would
        be through aggressive research including multiple tissue biopsies from skin and
        internal organs of those individuals who share the symptoms of lyme disease, and
        post-mortem study of those who did not survive the onslaught of their illness.
        We have had many requests Canada wide from very sick individuals or their family
        members who want to leave their or their loved ones remains for this specific
        research. Most have not been diagnosed with lyme, but suffer all of the symptoms.”
        • 23.01.08, 16:31
          Background information the Canadian government is not talking about:

          Our friendly migratory birds transport the ticks that carry Lyme disease around
          at random. Biting insects such as mosquitoes and horse flies have also been
          shown to transmit the disease. In the U.S. where our springtime migratory birds
          come from there is an estimated 200,000 human cases of Lyme disease each year
          and this is increasing year over year. Our government labs confirm fewer than 60
          cases per year in Canada.

          We do know Lyme is being misdiagnosed as other illnesses, or not diagnosed at
          all. Lyme disease is robbing many Canadian children of their youth and adults of
          their careers.

          Lyme disease can cause serious long-term health issues if not identified and
          treated early. It can affect the brain, eyesight, hearing, nervous system,
          muscles, joints, digestive tract, skin and most organs including the heart,
          liver, spleen, and kidneys. Because Lyme disease is a multi-system disorder many
          systems of the body can be affected at once.
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