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."