lyme rally

Discussion in 'Lyme Disease Archives' started by redsox10, Jun 3, 2006.

  1. redsox10

    redsox10 New Member

    This is long but it sums up what went on at the LYME RALLY. I thought some might enjoy reading.


    Lyme Rights Rally

    (the OptiMisTick Report)

    June 2nd, 2006, Hartford, CT.

    After only a few minutes by the steps of the Connecticut state
    Capitol building, I was struck first, by what a clean and well
    organized city Hartford is; second, by the organizational detail of
    the Lyme Rights Rally and third, by the spirit of the group that ran
    the rally.

    The way to the rally was well marked with Lime Green balloons, which
    we followed due to directional challenges. The Tent set up was HUGE,
    and filled with folding chairs (how thoughtful on behalf of Lyme
    people who can not stand too long). Eventually it was totally
    filled, even crowded, with people spilling out both sides, the back,
    and under trees as well as in the open. not to mention those under
    the over-hang of the legislative building positioned for speeches and
    such.

    I was impressed that, despite the anticipated miseries of weather, so
    many people nevertheless showed up in good cheer and having come
    great distances. By my tally, there were representatives from New
    York, New Jersey, Pennsylvania, Maryland, Virginia, District of
    Columbia, Connecticut, Massachusentts, Maine, ??New Hampshire (I
    thought), Rhode Island, Florida, California, Oregon, and one or more
    central USA states which I can not remember. Ohio might have been one
    of them.

    Early on I stopped to count adults, and stopped counting at 165. This
    did not include I would estimate at least 50 children and more and
    more folks arrived. If I was asked to give a truthful count I would
    estimate upwards of 225 and perhaps closer to 250. (By then it
    became too difficult to try to recount as there were too many too
    close together).

    There was a wonderful (voluntary) registration table filled with pins
    and bracelets and commemorative shirts for the occasion, "Thank You
    Dr. Jones for Caring."

    There were at least separate two journalists actively interviewing
    adults and children, with sound crew and photographers at work nearby.
    My impression was one of the crews was from Fox news service.

    It was so good to have a little time to interact with those I knew
    from several different discussion groups, and I was glad we were
    provided with name tags so I would recognize people who are on line
    as well as those from previous events that I "know I know" but have
    whose faces I have temporarily forgotten (Lyme memory doesn't always
    work!).

    Some of us made sure to set up the many rally signs at the foot of
    the steps of the legislative building where they would serve as good
    scenery for the cameras filming the speaker. One sign caught my
    attention, "If Lyme is so Rare, How Come My Friends Have It, Too."
    There was another great visual, a tall pole with many Lyme children's
    hands attached, with their names. There were several signs echoing
    the theme "Hands OFF My Lyme Doctor" from several states or areas of
    the country, along with lists of names of people, on these posters,
    who wished to be counted as echoing that sentiment.

    Karen Gaudian, of the Ridgefiled Lyme Disese Task Force gave an
    articulate, brief introduction, and then introduced Emcee Brooke
    Landau, who is a wonderful inspiration and Lyme Success story for us
    to look to when things feel grim and we are downhearted.

    Brooke Landau is a journalist and producer for networks such as E!
    Entertainment, America's Most Wanted, and ESPN. She related her
    tragic story of being undiagnosed for so many years and of her
    continuing struggle, over ten years, for diagnosis and treatment
    including over a quarter of a million dollars expended by her family
    in testing and treatment to arrive at a diagnosis and begin to
    address her condition.

    Eventually her body of experience, once she had recovered
    sufficiently to work, enabled her to produce a news show on Lyme
    disease for Fox News which ultimately won an Emmy. It was also aired
    nationwide on NBC's Today Show, The Discovery Channel, and EXTRA.

    I know the many teens and young adults in attendance took courage
    from her fight back from deterioration to being able to produce a
    show of such quality as to win an Emmy, let alone just to hold a full-
    time job.

    A Connecticut State Legislator, Dolly (Claudia) Powers spoke. She is
    the highest ranking member of the Greenwich delegation of the General
    Assembly. A supporter of Lyme sufferers since Connecticut's first
    hearing in 1999, Dolly was critical in helping with the legislation
    that ensured insurance coverage for Lyme patients. Her sincere
    involvement with and dedication to this cause was obvious in the
    speech she gave which related an account of CT's situation and the
    need to progress still further. Her talk was entitled "Update On
    Lyme in Connecticut."

    Dr. Joseph Burrascano received a standing ovation, as is his due, and
    launched into his thoughts on the "Diagnostic Dilemma." He spoke in
    such a sensible, well thought-out way that I wished the greater body
    of those folks resistant to our cause could hear him and be
    persuaded; no one could possibly resist or refute his logic.

    Dr. B. spoke of several paradoxes regarding Lyme disease and public,
    academic or government perceptions.

    For Example:

    He spoke of how one patient was bitten by a Lone Star tick and had
    unusual symptoms which they otherwise would not have been able to
    definitively identify IN HER, in terms of disease, BUT for her
    forethought to save the tick. They sent the tick away for testing
    and using DNA testing, THE TICK was found to carry a form of Babesia,
    but not the strain we commonly know related to Lyme co-infections.
    He mentioned when it is found in cattle, it is universally accepted
    as being fatal for cattle.

    He made the point that we can test for the presence of disease
    accurately in the culprit (tick) but not in the patient.

    His point was not so much to scare anyone as it was to note that lack
    of a positive result should not be used to deny treatment since there
    are other species of tickborne diseases that do not show up on
    testing for those few that are generally known, and testing should
    not be a tool to deny treatment.

    Other paradoxes:
    Regarding government, and sometimes insurance companies, the ELISA
    test lacks sensitivity, and yet is more acceptable to the the
    government and other entities including CDC than a PCR test, which
    measures actual DNA.

    The Government downplays the seriousness of tickborne diseases, and
    yet knows that one of them is so potent that they have weaponized it,
    Tularemia (a tickborne disease found in rabbits, among others).

    Chronically ill patients are less likely to test positive on the
    accepted tests and therefore are falsely perceived of as negative.
    Physicians and others will more readily accept the thought of a false
    positive than a false negative, yet false negatives are far more
    likely under current criteria.

    The bands 31 and 34 were removed from consideration for Lyme disease
    under CDC guidelines, and yet they are the most common bands for Lyme
    disease.

    CDC guidelines are only surveillance criteria and not intended for
    physicians to use for diagnosis, however, for test kits to be
    approved and accepted, the kits must follow CDC guidelines.

    We use PCR testing for other diseases all of the time, and yet it is
    not accepted by CDC and other entities, sometimes insurance, for Lyme
    disease/tickborne disease.

    Government and other entities warn of the grave dangers of antibiotic
    overuse, yet long term usage is allowed for the for the less life-
    threatening condition of acne. Recently a long-term minocycline
    protocol was approved for acne.

    One protocol for rheumatoid arthritis allows Minocycline to be used
    for 48 weeks, yet antibiotic/minocycline use for far fewer weeks is
    condemned with respect to the arthritis-similar condition of Lyme
    disease.

    Seventy seven million dollars are spent on West Nile per year (2500
    cases), yet paradoxically only thirty two million is spent on our
    nation's Number One vector borne disease. Lyme disease, (over 200,000
    cases meeting CDC criteria, and this estimate is admittedly low).

    We need to model after the AIDS movement with respect to activism,
    and speak out en masse, and educate aggressively and constructively
    and be determined that "We will not go away."

    Dr. B. also referred to Dr. Jones and said that long ago, before he
    (Dr. B) ever became known for Lyme disease, Dr. Jones as a personal
    hero of his and he knew him to be a great man.

    It was obvious why Connecticut Attorney General Richard Blumenthal is
    a hero to many in the Lyme community in his state. He has a very
    sharp mind and a thorough grasp of the issues surrounding Lyme
    disease in his state and in general. I am placing excerpts from his
    speech at the conclusion of this account.

    LDA President Pat Smith gave a very heartfelt speech pertaining to
    her family's experiences. She related her daughter's descent into
    illness and seizures, culminating in her curling up in a fetal
    position one day, and how hard she fought for diagnosis and
    treatment. She had to demand forcefully that the doctor test her
    daughter for Lyme disease, which he would not do until he first
    tested for everything else and received negative results. After the
    Lyme test, she never heard from him despite contacting his office
    several times until finally, after threateining legal action, guess
    what she found the test showed.

    It was obvious that this was the source of her determination and she
    is a tireless person who takes my breath away with all that she has
    been able to accomplish. She is an accomplished and persuasive
    speaker, too.

    Her young adult daughter now works for a medical publishing company,
    after graduating from college.

    Another role model for our Lyme children.

    Sandy Berenbaum spoke about the multiple challenges that Lyme
    students faced, particularly with respect to wrong diagnoses, and how
    some students had ended up in confinement at mental factilities or
    undergoing years of treatment - for the wrong diagnosis. She spoke
    about the social problems and educational problems that Lyme students
    faced, particularly due to the lack of knowledge which we all know to
    be so prevalent among school officials and staff.

    She spoke of the myth of antibiotic resistance resulting from
    overtreatment and mentioned the millions of pounds per year of
    antibiotics that are fed to well and healthy livestock for no other
    reason than to fatten them up for market, for the profit motive, and
    that any charges of antibiotic resistance should start there and not
    with sick people using medication they desperately need.

    Dr. Jones spoke briefly and in a very general way, as I am sure he
    was limited in scope by his lawyers. Still he made a great many
    people cry. We were struck by his age and the length of time he had
    been treating this disease, and by his kindness. We were also struck
    by his recent appearance of fraility, and the toll that this action
    must be taking on him.

    He thanked everyone for attending the rally and attending the hearing
    and somewhat emotionally asked for continued attendance at the future
    hearings, the next one of which is June 22nd. We need to continue to
    support his defense fund to keep him in practice, for who could ever
    replace him or take on his load and do it so well.

    The most emotional part of the rally centered on the many children
    who spoke. One young teen spoke about recovering enough to articipate
    in a 46 mile hike, which was phenomenal and I was so glad that other
    children heard this.

    I was glad the older children also spoke. I am sure it was daunting
    for them to face a crowd, and we all know how self-conscious teens
    can be. Nevertheless I could not have presented myself with the poise
    that these young adults did in the face of a large crowd, and
    expressed myself as well. These kids were all terrific.

    The thought of them all losing their doctor is just too terrible to
    imagine. We must all do what we can for Dr. Jones.

    It was so touching to see many of the younger speakers climb up on
    the chair to stand so that they could see over the podium, clutching
    handfuls of flowers for Dr. Jones. They related their own
    experiences, and then climbed down, and walked over to Dr. Jones to
    present him with their fistfulls of flowers, and he embraced each one
    of them, bringing tears to many eyes.

    As Brooke Landau later commented, it is a sad state of affairs when
    children so young can so correctly and easily pronounce words such
    as "Erlichiosis."

    On this note, the program concluded and the rains came more heavily
    than the mist that had overshadowed the last part of the rally.

    The worst of the heavy rains held back until we were well on our way
    home (took hours extra).

    I know the thoughts and words of the speakers and those expressed to
    one another will stay in our hearts and minds long after the rally.
    One point emphasized by many speakers was how little has changed for
    so long, and how we must be vigilant and demanding that things must
    now change and we must not stop demanding until they do.

    Let us all go forward with this in mind.

    ----------------

    Excerpts from AG Blumenthals speech:

    [CT] ATTORNEY GENERAL CHASTISES DEPARTMENT OF PUBLIC HEALTH FOR
    FAILING TO INSTITUTE ELECTRONIC SYSTEM FOR REPORTING LYME DISEASE
    CASES

    "We should be alarmed and astonished that our state is vastly
    underreporting the severity of our Lyme disease crisis. Very simply,
    the Department of Public Health is underreporting the incidence of
    the disease by huge, horrendous magnitudes. Our system is currently
    reporting only a fraction of the number of actual cases. It is a
    public health travesty and tragedy.

    "The reason for current underreporting is that the Department of
    Public Health eliminated laboratory reporting in 2003 due to supposed
    budgetary constraints. The number of reported cases declined from
    approximately 4,000 in 2003 to about 1,300 in 2004. For the last year
    of statistics in 2005, they increased by 34 percent to 1,810 cases.

    "The 500-case increase is frightening, but it would have been much
    higher if an adequate reporting system for laboratories were in
    place. Currently, the only reporting is from physician offices.

    "At a hearing on Jan. 29, 2004, the Department of Public Health
    promised that an electronic or online laboratory reporting system
    would be in place by summer 2005. We are now beginning the summer of
    2006 at the height of the Lyme disease season without an adequate
    reporting system in place. The Health Department is underreporting
    and understating the numbers of Lyme disease cases and misleadingly
    reassuring the public.

    "Tragically and unforgivably, this underreporting deprives
    Connecticut of federal resources for research, improved diagnosis,
    enhanced treatment and testing. Numbers drive funding and policy -
    and inaccurate numbers drive them down. We need better interdiction
    and intervention, which are stymied and restrained by underreporting
    the problem - causing further underfunding by the National Institutes
    of Health and the Center for Disease Control.

    "At present, there is no firm date or plan for adequate laboratory
    reporting. My office has pursued this issue with the Department of
    Public health, so far to no avail, but we are writing again today to
    the commissioner.

    My hope is that this rally will mobilize opinion demanding action.

    "In the meantime, my office will continue to fight for better
    diagnosis and care, as well as adequate insurance, addressing the
    insidious and horrific effects this disease may have on individual
    lives."






  2. victoria

    victoria New Member

    did you go?

    I cannot believe CT eliminated lab reporting as 'too expensive'!

    And it really burns me up that the CDC itself reports that 95% of vector borne disease in the USA is Lyme, while West Nile represents less than the remaining 5% -

    -yet it gets all the media hype. Unbelievable!

    Thanks redsox!
    Victoria

  3. redsox10

    redsox10 New Member

    No we did not get to go. If it was any other month we would of. My daughter is having a heck of a time lately with babesia. She is struggling to finish up the school year. It would of been great to be there with others. My daughter commented on how she would of loved to go., Hopefully there will be more in the future. We need to speak out about his.