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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 or
    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="
  • 02.11.07, 15:42
    (1) Centers for Disease Control, MMWR Weekly,
    retrieved June 19, 2007.

    (2) Directors of Health Promotion and Education, retrieved April 26, 2007.

    (3) Measures to prevent bites from mosquitoes, ticks, fleas, and other
    insects and arthropods, Centers for Disease Control and Prevention Travel
    Guidelines, October 26, 2006

    (C) 2007 Bayer HealthCare LLC, Animal Health Division,
    Shawnee Mission, Kansas, 66201
    Bayer, the Bayer Cross, Advantage and K9 Advantix are
    trademarks of Bayer.
  • 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 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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