Long Branch, NJ – LDA Spotlight On Lyme Walk

Too often today instead of spending time with our families having fun outdoors, we are spending time trying to protect them from the dangers which lurk not only in our public recreation areas but in our own backyards.   

Our children 5-9 and 10-14 are at the highest risk of acquiring this disease which ravaged
274,440 new victims in 2007 alone, 31,340 of them new Jerseyians.  NJ claims 12% of
Lyme cases reported to the CDC nationally since 1990. Yet there is little to no awareness
or monies expended on the disease in NJ or by the federal government.
 
We have a bill in Congress which would provide $100 million for Lyme disease research,
education and prevention, yet despite the NJ statistics, a local NJ Congressman has not
put the bill up for a hearing in the House Health Subcommittee.  
 
We need to make Lyme disease something more than a disease we all hear about, read
about, and view clips about on U tube, we need to take actions that will save people from
suffering and death due to Lyme disease.  Today’s walk and run is one of the actions
where we raise awareness about Lyme and raise funds to help research for a cure.
 
The Lyme disease Association has raised and distributed millions of dollars in its quest to
get answers and has even with Time for Lyme, its Connecticut affiliate, endowed a
research center at Columbia University in New York to perform cutting edge research
such as the project published a week ago through the Center showing that patients with
persistent Lyme encephalopathy do have objective abnormalities in functional brain
activity, an important concrete finding.
 
LDA has been meeting and talking with CDC, NIH, EPA, US Army CHPPM, and other
governmental officials to try to communicate the level of devastation Lyme disease is
producing nationwide.   
 
LDA’s Spotlight on Lyme is an event which raises awareness, generates funding and
shows that people in NJ are concerned about Lyme disease and want something to be
done about it.  
 
The effort here today was spearheaded by those who are intimately acquainted with
Lyme disease, Committee Event Co-Chairs Kim Cronin, Alyssa Murray, and Joan Wire,
whose lives and families have been significantly altered by Lyme disease. They have
spent countless hours putting together this event, and we are grateful to them and the
organizing committee for their efforts. The Lyme Disease Association thanks all the
sponsors for their generosity and all the participants for making this event a success.  
 
Together, we will make a difference.




Mt. Equinox, VT – 2008 Gear Up For Lyme Bike Climb

Remarks of Pat Smith, President, Lyme Disease Association, Inc. (LDA) Gear Up for Lyme August 2, 2008 Mt. Equinox, Vermont 888 366 6611 www.LymeDiseaseAssociation.com


Remarks of Pat Smith, President, Lyme Disease Association, Inc. (LDA) Gear Up for Lyme August 2, 2008 Mt. Equinox, Vermont 888 366 6611 www.LymeDiseaseAssociation.com

 

Lyme, the most prevalent vector-borne disease in the US is found in over 65 countries worldwide. About 220,000 new cases of Lyme disease develop each year, and some studies indicate 15-34% or more may develop into chronic disease.


The number of reported Lyme disease cases from tick bites in Vermont has nearly tripled over the two year period 2005-2007 (29 cases in 2005, 83 cases in 2007) and numbers in surrounding New England States such as New Hampshire and Massachusetts are also on the rise.


Worldwide, many scientists including those working with the UN, think that global warming plays a big role in the increase in tick populations and resultant increase in disease. A study out of Sweden showed that ticks have moved almost north to the Arctic Circle and now are active in January. Here, too, in the northeast, we have seen the same thing happening during the winter months.


Currently, the Canadian government is drawing up risk maps to project future populations of the deer tick based on global warming projections because the tick has spread so much already in Canada.


Vermont health officials have also reported an increase in tick populations here, especially the deer tick and dog tick. All ticks are a concern, but the deer tick, the very aggressive lone star tick which is moving northward, and the American dog tick are some of the more common threats in the Northeast.


These ticks now carry one or more of TBDs which can complicate diagnosis and treatment including ehrlichiosis, babesiosis, anaplasmosis, encephalitis, tularemia, tick-borne bartonella, tick paralysis, STARI, Rocky Mountain Spotted Fever, and Q fever.


During the feeding process, the tick secrets a substance to numb you, it cuts you open, and sticks a hollow tube with barbs into you. It secrets a cement like substance to glue itself onto you and blood thinners to help it feed. It may also secrete chemicals to fool your immune system.


It can then transmit one or more infections that can wreak untold havoc: dozens of doctors, fighting to get a diagnosis and treatment, years of treatment, lost income, lost school time, and piles of unpaid medical bills.


Lyme is serious. It can enter the central nervous system within hours of a tick bite. It can hide in the skin & Joints, evade the immune system, mutate, change into forms unrecognizable to conventional antibiotics and can kill cells that are supposed to kill it. It can cross the placenta, cause death of the fetus, and it can kill those infected.


Lyme can attack every system in the body and can mimic many other conditions including MS, ALS, CFS, FM, Parkinson’s, Alzheimer’s, lupus, and even an autism-like condition.


Our children are at the greatest risk of acquiring the disease, and they may spend years out of school due to its effects which can include a drop in IQ.


Yet there is a distinct lack of emphasis placed on Lyme and other tick-borne diseases by many in the medical and governmental communities. Organizations such as the LDA and its affiliate Time for Lyme in Connecticut have worked hard to educate about Lyme and to raise funds for research. The Manchester Rotary, with your help, has been a part of LDAs and TFLs efforts creating the new research center at Columbia University in New York—a Center devoted to the study of chronic Lyme disease.


Besides research, we are working with government officials to provide education initiatives and also legislation to fund Lyme disease research at a broader scale, since CDC & NIH combined only get about $34 million for this terrible disease while West Nile Virus gets over $80 million annually.


Last Aug, a few weeks after the 2007 Gear Up event, I was invited to Ft Collins Colorado, the home of the Centers for Disease Control & Prevention Lyme disease research labs. I was given the opportunity to present to the vector-borne disease division there about Lyme and its effects on patients and what some of our groups have been doing to counteract the spread. Several weeks ago, CDC sent some of its people to CT to listen to residents and advocates. Other meetings are planned.


Whether this signals a CDC change in philosophy about Lyme disease remains to be seen. All we can do is continue our efforts to raise funds to fight Lyme and to educate people to stop its spread. We need everyone’s help to do that and to help pressure the federal government to overcome its reluctance to deal with tick-borne diseases in an appropriate fashion, so that we can again reclaim the great outdoors without fear of our families developing debilitating diseases including Lyme.


I thank the Holzmans, the Rotary, the sponsors, and you for being a part of this effort.




Corning, NY – LDA Corning Chapter Lyme Walk

Lyme Walk, Corning New York June 7, 2008

 


Lyme Walk, Corning New York June 7, 2008

Pat Smith, President, Lyme Disease Association
www.LymeDiseaseAssociation.org


I spoke with a guy who takes pictures of ticks for a living, and he told me that he must be very careful with Lone Stars, as he took a vial of the tiny nymph stage of the Lone Star out of the refrigerator, and opened it up and they swarmed all over him before he could protect himself.

All of these diseases and all of these ticks need to be more thoroughly researched so we can find out how to control the ticks, what other kinds of disease organisms the ticks are carrying and transmitting, and how can we treat these diseases. To date, however, the government has turned a blind eye to tick-borne diseases.

While West Nile virus which may have 3300 cases a year gets over $80 Mannually, Lyme disease gets about $34M for 230,000 cases.
The Lyme Disease Association is trying to change that by raising monies for research projects across the country. It has not only provided monies for natural prevention research such as looking at nematodes for tick control, but also it has funded research which has provided a genome map for a number of different strains of the Lyme bacteria that may be infecting people. LDA currently has monies going into examining ticks to see what is inside them, and monies looking for a gold standard test for Lyme disease that can help patients be diagnosed and help those who are still sick to see if they are still infected. LDA has also helped to open an neuromuscular center at NYU to help Lyme disease patients who often have difficulties in that area. The Association also has the only national program for children without insurance, so they can get diagnosed and treated for Lyme disease, partnering with internationally acclaimed author Amy Tan.

Shortly, LDA will have a downloadable slide show for schools on Lyme disease awareness and prevention. And partnering with UMDNJ with a grant from the Environmental Protection Agency, we are working to develop an interactive online video game on Lyme disease prevention suitable for children I am here today because my youngest daughter went from a happy, healthy, gifted 10 year old who lived to play soccer and excel in school, to a child who could not get out of bed, who could barely walk 20 feet. She slept 18-20 hours a day, and when awake, could tolerate no stimulus of any kind, even talking or watching TV.

Today she works on a medical journal, and lives and works like there is no tomorrow. She even plays soccer 20 years into the disease, something she told me she would do if she was even well enough to do so again. She does not look sick, although she still is, and those who have experienced the ravages of this disease know that is perhaps one of its biggest curses. She now has heart damage due to Lyme and other serious systemic problems, but she has a life thanks to treatment.

 
 

 




Bergen County, NJ – Insights into the Crisis, Key Players & the Future

Bergen Community College May 29, 2008 Pat Smith, President, LDA www.LymeDsieaseAssociation.org


I welcome you tonight on behalf of the Lyme Disease Association to tonight’s event, Lyme Disease: Insights into the Crisis, Key Players and the Future. Tonight’s program is a departure from the traditional Lyme Disease Association medical forums which focus on awareness about research, the disease, and its demographics.


Tonight’s event came to pass partly because an exciting new book, Cure Unknown: Inside the Lyme Epidemic, is being released in a few weeks, and partly, because it is becoming increasingly difficult for patients to receive treatment for chronic Lyme disease. It is an unfortunate occurrence that patients must now not only be knowledgeable about their disease and both standards of care, but also be knowledgeable about the politics that are slowly strangling them and their physicians.


The only way to fight against such a political stranglehold is by amassing an informed force of patients not only nationwide but worldwide to fight those who would deprive sick patients of their treatment. Just this week, I read of a desperate father who raised $14,000 to hire a lear jet to fly his daughter from Canada to the US to get Lyme disease treatment as she is so frail regular airlines refused to transport her. I know that this story will resonate with many of you in this room who have completely had your lives changed due to Lyme disease, and you will hear a few individual’s stories here tonight of just such experiences.


I happen to be one of those individuals. Early in our marriage, my husband & I decided that I would stay at home and raise our three daughters until they were old enough to care for themselves, then I would go back into the workplace, probably back to education.


That was before Lyme. When Lyme hit two of our daughters, in the 80’s, we had little information and few to help us along the way, however, we did have some Lyme pioneers, and I am thankful for them and the guidance they provided.


My youngest daughter went from a happy, healthy, gifted 10 year old who lived to play soccer and excel in school, to a child who could not get out of bed, who could barely walk 20 feet. She slept 18-20 hours a day, and when awake, could tolerate no stimulus of any kind, even talking or watching TV. In the beginning, after her first treatment, she was “cured,” and what did I know then, I thought so, too. She continued to play soccer while getting treated, then went off treatment for a short while. One day, she went to bed and did not get out of it. When she relapsed, the doctor refused to give her a Lyme titer despite all my arguments, until he finally agreed that he would do so only after he gave her an entire battery of tests, all of which seemed unrelated to me, and until they came back negative. Then he refused to speak with me at all when I called to get the titer results, until I threatened legal action. Suddenly, then, he got on the phone and told me she was positive but that he was not “intellectually convinced” she had Lyme. I assured him I was not concerned about his intellectual opinion at all, and as a matter of fact, had already taken her to another doctor to begin treatment.


The long dark years began with IV, IM, orals, combinations. She was out of school for almost three full years by this time. But she rallied, and she was ready to go to high school! I remember how excited she was when a neighbor asked her to babysit, her first normal thing as a teen, a few days before school opened. The baby had a virus no one told us about. Her immune system was too compromised and within a day or so she backslid. No school for her. A few weeks later, she had
hallucinations; I was horrified, then came grand mal type seizures, and other visual, auditory, and olfactory hallucinations.


During this period, Congressman Christopher Smith whom I had been working with on Lyme disease, hosted the first congressional panel on Lyme, in my town in 1992. My daughter and I both spoke, she much more eloquently than I, although she was only 15, and barely functional. She got a standing ovation. She had wanted to talk about her seizures but the Lyme doctors said absolutely not, the state will come in and take your daughter away from you and she will not get Lyme treatment either. I was skeptical, but thankfully, followed their advice. Today we know moms are having their children taken away for long-term treatment–allegedly for Munchausen by proxy, making their children sick.


After intense treatment for several months, her grand mal type seizures stopped, she was better and getting somewhat stronger. Then several weeks later, the disease took her and us to a depth I never knew existed. I liken it to Dante’s Inferno, circling down into Hell and thinking we had experienced the worst and finding there were levels far beyond what any human should see, especially in one’s own child.

She had episodes where she went into mental states where she did not know who she was, where she was, or who we were, or that we were even there. “They” were coming to get her. She often awoke with blood curdling screams in these states, and once I spent hours assuring her to no avail that she did not have 6 fingers on one hand but five, and another time she repeated for hours that she wanted to go home, yet we were in our house in her room. She became mentally unreachable for what became 15 hours day/ 6 & 7 days a week for three years. I slept on the floor next to her bed many times, the little sleep I got. I never knew who would wake up and when, my beautiful child, or some screaming stranger who had taken over my daughter’s body, or a zombie like individual who stared off into some unseen world I was unable to comprehend or penetrate. So serious was her condition, that while she slept, I often would check to see if she were breathing, just as a new mother does with an infant. Meanwhile, my mom developed Hodgkin’s Disease and my dad, Alzheimer’s.

I wonder to this day if it were the result of the Lyme disease they had each contracted over time, both had bull’s eye rashes, although they never told me until way after the fact, I am sure thinking I had enough on my plate. Now we cared for my parents, too, and they would compare their arthritic symptoms, my then almost 80 year old mother with Rheumatoid Arthritis and my teenager, when she was lucid, which was increasingly less.


I found a doctor six hours away who was doing some new work on Lyme disease, and with great trepidation, we drove there and he was able to identify my daughter’s episodes as temporal lobe seizures. I was ecstatic, I had a name for what she was experiencing. I looked up and called one of the doctors in the US who specializes in temporal lobe epilepsy, and I described her manifestations. He said, “congratulations, you now know more about temporal lobe epilepsy than most doctors in the world.” Knowledge was power, and I hungered to explore the links between neuroborreliosis and seizures, no mean fete in a time of no internet.


The doctor who recognized the seizures as such gave us a number of things to try and we coupled those with other medical interventions affecting other body systems and slowly she was able to overcome her manifestations. Finally, in grade 11, she entered school for the first time since grade 6, although only a few hours per day. It was a victory. As she progressed, she could do more and more physical activity, but she never went to school full time, even senior year. Yet she graduated #6 in her class and I remember the day she got her acceptance letter and money offer from Johns Hopkins. I wondered who that person was that was screaming—turns out, it was me and her, for joy this time. My thoughts were, Lyme disease, we have beaten you.


She went to Hopkins and had a normal life there for the first time. Of course childhood was not to ever be returned to her, but she dated, worked, drove, volunteered in the inner city, and carried a full course load. She had about a 4.0 GPA. Then Lyme reared its ugly head. She started seizing again, her roommates took care of her. She did not want to come home. Then, she was attending no classes, seizing randomly. I was balancing between being a responsible mother and letting her have the freedom we both worked so hard for her to have. We played the game Lyme parents and older children often play on the telephone: The “How are you today, I am fine,” game, when I knew she was unable to function and she knew I knew. Finally, I could not responsibly allow her to stay there and picked up the phone to reluctantly tell her she must come home. She called at that moment to tell me the same. It was a sad day. I picked her up that Nov. day and she was in seizures almost my entire three+ hour drive home.


She went on IV in late November. The seizures stopped. The plan had been to take the spring semester off and then back in the fall, as Hopkins held her place. Instead, come Jan. scant weeks after coming home, she went to January intercession classes–then back to Hopkins for the spring semester and then to summer school classes closer to home. She made up her entire semester she had missed, and in the fall of senior year, went to London for study abroad, which she was to have done the previous spring. She enjoyed London, and me, I was still a Mom and worried, so I got a passport and went to visit her after my mom died.


Somewhere along the Lyme journey, the power shifted from Mom in total control (or so I viewed it) to a 51-49 split in her favor. She was an adult now and responsible for her life and health. We joked about it, but no doubt, I was still responsible for the worrying. She graduated Hopkins on time with honors and phi beta kappa, surely an example that refutes those who say that Lyme patients want to be sick.


Today she works on a medical publication, and lives and works like there is no tomorrow. She even plays soccer 20 years into the disease, something she told me she would do if she was even well enough to do so again. She does not look sick, and those who have experienced the ravages of this disease know that is perhaps one of its biggest curses. Denialists would look and say, she is fine, she looks good and could not be that sick and play soccer and have a job. Many of you here know better and know that only the most stubborn and spirited survive this disease. However, she now has heart damage due to Lyme and other serious systemic problems, but she has a life thanks to treatment.


I am here because I so admire her courage and strength and that of others like her around the world that I hear about, and so I cannot leave. My thoughts of being in the workforce in education were replaced with volunteering for Lyme disease, and I have been involved for 22 years, and I believe today actually begins my 12th year as LDA president. I have closely observed and been a caregiver for diseases and conditions from Type 1 diabetes, I have a daughter with it, to Hodgkin’s, Rheumatoid arthritis, congestive heart failure, osteoporosis, spinal stenosis, thyroid disease, kidney failure, Alzheimer’s, and others.

What sets Lyme apart the most is not the disease itself but those who would profit from its misery and prevent sick people from getting help, and those who would prevent science from uncovering the answers. That is why I am here tonight. We need to change that picture, and it can be done by spreading the word about the politics as well as the science of Lyme. We have a noted panel to help us do that, and at this time I will introduce each panelist who will provide a somewhat personal introduction into why and how they are here tonight. Then the panel will interact with one another, and that will be followed by a question and answer period from the audience.

Thank you.




Sandy Hook, NJ – LDA Spotlight on Lyme Walk

Spotlight on Lyme May 18, 2008 LymeDiseaseAssociation.org


Spotlight on Lyme May 18, 2008 LymeDiseaseAssociation.org


The United Nations is now writing reports about how global warming is enabling ticks to spread worldwide and move northward, where according to a 2007 report, they have been observed in Sweden in January and also near the Arctic Circle. Many of us in the NE do not need to read the reports to know that ticks are appearing here in January on a regular basis and infecting people. The aggressive lone star tick is expanding its range and numbers in NJ to spread the whole host of diseases it carries.


Unfortunately, government continues to give credence to those who spread information designed to lull people into a false sense of security and not designed to empower people to take the steps necessary to protect themselves.


We need to take back our control over the environment, we need to take steps through education and through research to get back to an environment where a walk or ride through the woods or hugging of the family dog will not signal cause for alarm.


Part of the monies raised here today will do just that. LDA needs to continue funding important projects which will include examining ticks for other infective organisms, looking for the elusive gold standard test for Lyme disease, and finding a cure.


LDA walk Chairs, Kim and Pete Cronin and their Committee have done a great job organizing this event here today. Besides raising monies, the walk has generated education and attention to this debilitating disease which can cause cardiac, neurologic, musculo-skeletal, ophthalmologic, and psychiatric manifestations. We thank you for helping to make this day a success and to keep our families free of Lyme and other tick-borne diseases. Together, we can regain the freedom to enjoy the outdoors and find a cure for those already afflicted with this incapacitating disease.

Thank you.

 




Long Branch, NJ – Rally Outside Congressman Pallone’s Office

I welcome you here to the County where I have lived for 37 years. Monmouth County is usually known for its part in the Civil War! The Battle of Monmouth was fought not too many miles from here, in 1778. That battle was declared a draw. In 1978, 200 years after that battle, Lyme got its start here in NJ in Monmouth County! that was 30 years ago. 49% of NJ cases at that time were in Monmouth County. Today, the County ranks 2nd out of 21 NJ counties in case numbers. Monmouth has a long history of Lyme-related events, from the disease springing up here first, to the first at large Congressional meeting in 1992 in my hometown about 15 miles from here. Wall Township was a relatively undeveloped 32 square miles, when Congressman Chris Smith, now sponsor of the Lyme bill, brought together public officials, doctors, patients and advocates to explore the problems of Lyme disease. There was a packed house with patients from all over the Northeast. That was my first experience as a speaker on a government panel for Lyme disease, but unfortunately, not my last. A 14 year old girl sat on that panel, one who had already been out of school for several years at that time. She addressed the crowd and she ended in an emotional voice with “My whole life has been consumed with Lyme disease. I used to be a normal teenager talking about soccer, music and boys. Now my vocabulary consists of Herxheimer, IV claroran, Ixodes ticks, spirochetes, and MRIs. Before, I worried about how my hair looked, now I worry about blood test results, passing Lyme onto my children and dying. After this meeting, don’t think you know all there is to know about Lyme disease. Believe me, you don’t know anything about Lyme until you have it.” That girl received a standing ovation.

What the panel and audience did not know was that child was having frequent seizures at that time, seizure states that progressed to 15 hrs day, 6-7 days/week. She could not talk about her seizures then. Doctors told her mother that the authorities would come in and take her daughter away if she talked about what was happening. So that mother dealt with it herself, an experience that is burned into her very soul, an experience which passing time and becoming a grandmother 3 times cannot erase! A life altering experience.

That mother stands before you today to say that Lyme patients have come a long way. Last week they celebrated a great victory with the settlement announced by Attorney General Richard Blumenthal which forces IDSA to re-examine its Lyme treatment guidelines in a more public and less biased and less vested manner. That settlement came about because Lyme groups went to the Attorney General and told him their concerns, and he listened. He heard them. He acted responsibly. Today we are here to make Congress listen. When they hear us, they will act. Then we will finally be on the road to helping patients and curing this disease. The shame, stigma, and dangers of having Lyme disease will eventually be in the past, and no adult, and no child will ever again be ridiculed. No mother will be made to feel she needs to lock her child’s disease away to protect her child. The first battle of Monmouth lasted a day and had 650 casualties. It was considered a draw. This 2nd battle of Monmouth played out nationwide, the Lyme disease one, has lasted for 30 years. There have been hundreds of thousands of casualties with no end in sight. Many of those casualties are our children. This battle will not end in a draw but will end with victory for patients, whether today or in the future, but at what cost? We must hold our government accountable or all Lyme patients, especially our children. We can and we must make them listen, now, today, before we have even one more casualty from Lyme disease. Thank you all for coming today.




Suffolk, NY – Town Hall Lyme Meeting Coordinated by Empire State LDA

Suffolk, NY – Town Hall Lyme Disease Meeting Coordinated by Empire State LDA

Suffolk County Legislator Lyme Seminar, August 30, 2007 Patricia V. Smith, Lyme Disease Association, Inc. www.LymeDiseaseAssociation.org


Legislator Romaine: Thank you for hosting this panel on Lyme disease, which affects over 50,000 New Yorkers annually. The LDA is a national all volunteer non-profit that has 27 allied organizations including in NY, affiliate Empire State Lyme Disease Association, Corning/FingerLakes Area Chapter, NYC Support Group, Hudson Valley LDA, Military Lyme Support on the Long Island and STOPTICKS in Dutchess as a coalition partner. The LDA’s mission is to promote education, research, prevention, and patient support.


Of special interest in NY this year is the opening of the Lyme and Other Tick Borne Diseases Research Center at Columbia University funded through efforts of the LDA and Time for Lyme (TFL), its CT affiliate (introduce Diane Blanchard). The Center, first of its kind in the world, is focusing on chronic Lyme disease research with one goal to develop a gold standard test. A recent Johns Hopkins study showed Lyme tests missed 75% of cases, yet they continue to be used diagnostically in New York, thus, people with Lyme disease may be misdiagnosed with Alzheimer’s, CF, fibromyalgia, ADD, MS, ALS, lupus, and even autism.


Chronic Lyme patients have been described as being as sick as those with congestive heart failure, and the costs to society can be staggering. According to a 1998 study in a CDC journal, early Lyme costs averaged $161 per patient and neurologic longstanding Lyme disease averaged $61,243. An actuarial study in the journal Contingencies states, “37% of the financial costs of this disease is incurred before the correct diagnosis is made.” A delay in diagnosis leads to more chronic disease since the Lyme bacterium can get into the brain within 24 hours of a tick bite.


Lyme is the most prevalent vector-borne disease in the US. From 1993 to 2005 (except 2003), NY has been number one in reported cases and three counties nationally had annual rates above 300 cases per 100,000 of population; two in NY: Columbia and Dutchess.


The CDC concludes that only 10% of cases that meet its surveillance criteria are actually reported, so 233,050 cases that fit the surveillance criteria probably occurred nationally− 55,650 of these were NY residents. Just released 2006 numbers show NY accounting for 23% of cases. The numbers do not include the cases of Lyme that are clinically diagnosed by physicians.


Lyme disease frequently strikes our children ages 5-14 according to CDC. In a CDC study in NJ of 65 children with Lyme disease in grades K-12, the median number of school days missed was 140, with median duration of home instruction, 153 days. 78% of the children experienced a fall in grade point average during the time of illness. Over 78% experienced a decrease in friends. “…often, patients spent large blocks of time as semi-invalids, isolated from social groups and missing out on cultural, sports and social activities….School performance of nearly all patients fell sometimes drastically, and in several instances, was said to interfere with selection by colleges and universities.” A study at Columbia University demonstrated a rise in IQ of 22 points in a student with Lyme disease after proper treatment.


Since that 1992 school study, case numbers have close to tripled. Now we have other emerging tick-borne diseases transmitted by deer ticks including anaplasmosis,/ehrlichiosis, babesiosis, bartonellosis, tularemia, tick paralysis. Add to that, Amblyomma americanum, the Lone star tick, which 20 years ago roamed only as far north as Central NJ, and is now found as far North as Maine. Long Island has a huge population of the lone star ticks which can carry a Lyme-like disease called STARI, Southern tick-associated rash illness. STARI looks and acts like Lyme, may have a bull’s eye rash like Lyme, is treated the same but is not detected by currently available Lyme tests. Doctors often tell patients not to worry, the tick that bit you was not a deer tick, yet the lone star carries not only STARI, but ehrlichiosis, Rocky Mountain spotted fever, tularemia, and possibly tick paralysis. The American dog tick transmits RMSF, ehrlichiosis, and tularemia.


These are some of the reasons LDA and its allied organizations have supported the development and passage of federal legislation. US House bill HR 741 (Smith/Stupak) already has 88 co sponsors including 25 out of 29 New York Congressman counting Tim Bishop from this district. It provides $100 million over 5 years for research, prevention, physician education, and formation of a federal task force and is necessary to focus attention on Lyme disease, since its funding is being vastly overshadowed by funding for other less prevalent diseases like West Nile Virus (WNV). In 2005, the government spent about $32.6 million on Lyme disease and $80.8 million on WNV, despite the fact there were 7.5 times more Lyme cases reported than WNV.


The US Senate companion bill, S 1708, was introduced in June by Senators Dodd, Schumer and Hagel. Sen. Schumer invited me to a press conference in NY last month to gain recognition for the bill as he discussed his own recent bout with Lyme disease.


The physician education component of the Federal bill is vitally important, since large numbers of doctors remain uninformed about the basics of Lyme disease, e.g., less than 50% of people who develop Lyme disease have a bull’s eye-shaped EM rash and a negative test does not rule out Lyme disease. Patients without a bull’s-eye rash or those with symptoms and negative tests are being turned away without a diagnosis or treatment.


A number of physicians are treating Lyme disease based on the Infectious Diseases Society of America (IDSA) guidelines which recommend against any long-term treatment for people who are chronically ill with Lyme, and against entire classes of antibiotics, alternative treatments, and supplements. They also recommend against individual physician discretion. Bottom line is, long suffering patients are now told they can get no treatment for their chronic Lyme disease and patients recently bitten may not be adequately treated, leading into a more chronic and disabling stage of the disease.


The IDSA guidelines ignore other standards of care which address early infection as well as more complex chronic cases− for example-the peer reviewed guidelines published by the International Lyme & Associated Diseases Society (ILADS), a professional medical and research organization. Both guidelines were accepted for publication on the National Guidelines Clearing House website, under the auspices of Health & Human Services.


In spite of the acceptance of these guidelines by the Clearing House, practicing physicians continue to be monitored by insurance companies who flag long-term treatment practices. Sometimes insurers privately indicate to the physicians they either need to curtail prescribing antibiotics for Lyme disease or need to leave the insurance plan. Some leave voluntarily in response to the pressure, others are forced out and continue treating patients without accepting insurance. Other physicians fear scrutiny from the insurance companies and have stopped treating Lyme disease entirely. The lack of insurance coverage creates a severe hardship on patients.

Last year, the Attorney General of Connecticut instituted an ongoing investigation into the IDSA guidelines development citing exclusionary conduct and commercial conflicts of interest which may violate anti trust laws.


Treating doctors feel that the Lyme bacterium which has the ability to hide inside the cells, kill cells that are supposed to kill it, and maybe even to change into other forms, may not be eradicated when treatment is restricted. Yet insurers often deny coverage based upon the CDC surveillance criteria which the CDC clearly states are for surveillance purposes only, not for diagnosing or for reimbursing.


Patients are becoming more vocal and have increasingly turned to established organizations such as the Lyme Disease Association (LDA) for help. Legislative solutions to Lyme disease problems are being sought and achieved by patients and advocates nationwide and more partnerships are being established for research. For example, and I am announcing this for the first time this evening, LDA and Time for Lyme are now partnering with NYU to open a neuromuscular center next month. Research will focus on Lyme patients who have problems with the autonomic nervous system and other neuro-muscular problems.


In closing, I want to update you on our progress with the federal government. In July 2006, LDA met with Dr. Julie Gerberding, Director, Centers for Disease Control and Prevention (CDC) in Washington, DC. 20 hours ago, I returned from a visit to the CDC’s Vector-Borne Disease Division in Ft. Collins, Colorado. They invited me to a day long series of meetings where they briefed me and had me present the issues surrounding Lyme disease to the Vector-Borne Division there at Ft. Collins where the Lyme bacteria are studied in a secure laboratory. I discussed the lack of focus on the disease and the impact on patients, how they cannot get diagnosed, treated, and reimbursed—how hospitals are not caring for patients, how pharmacists are refusing to dispense prescriptions and how mothers who seek treatment for their children are being investigated for Munchausen’s by Proxy.


I also discussed the difficulties facing treating physicians− peer, medical board, and insurer pressure not to treat and eroding clinical discretion. This was a breakthrough meeting where both sides spoke frankly and committed to continued meetings and dialogue to help bring together clinicians, researchers, government officials and patients in a united front to fight the common enemy, borrelia burgdorferi, the bacterium that causes Lyme disease. We will win.


Thank you. 

 

 




Mt. Equinox, VT – 2007 Gear Up For Lyme Rotary Bike Climb

Mt Equinox Bike Climb (VT) Gear Up for Lyme August 4, 2007 Remarks of Pat Smith, LDA President LymeDiseaseAssociation.org


The United Nations is now writing reports about how global warming is enabling ticks to spread worldwide and move northward, where according to a 2007 report, they have been observed in Sweden in January and also near the Arctic Circle. Many of us in the NE do not need to read the reports to know that ticks are appearing in here in January on a regular basis and infecting people. The aggressive lone star tick is expanding its range to spread the whole host of diseases it carries further north than ever, invading even Maine.


Yet the government continues to give credence to those who spread information designed to lull people into a false sense of security and not designed to empower people to take the steps necessary to protect themselves.


We need to take back our control over the environment, we need to take steps through education and through research to get back to an environment where a walk or ride through the woods or hugging of the family dog will not signal cause for alarm.


Your efforts have paid off to date and will continue to move the field of Lyme disease forward. We thank the Rotary, the riders, and the Holzmans whose dedication has made this annual event very successful both in raising awareness and in raising funds for research. Together, we can regain the freedom to enjoy the outdoors and find a cure for those already afflicted with this incapacitating disease.

Thank you.




Westchester, NY – Lyme Rights Rally Speech

Lyme Rights Rally Westchester County, New York, November 30, 2006
Pat Smith , President Lyme Disease Association, Inc.
www.LymeDiseaseAssociation.org

Thanks organizers.

([Show clock] At first glance, this appears to be an ordinary clock, a closer look shows, it is not. What is wrong with this clock? It’s going backwards, counterclockwise, carrying us back in time. Just like this clock, the IDSA guidelines are carrying us back in time, taking us back to the dark ages of Lyme. True science moves forward, not backward, and like the clock running counterclockwise, the guidelines are not useful in our lives, so we need to get rid of both the clock and the guidelines [put them in trash bag] and replace them with forward moving guidelines that work, like the ILADS guidelines! [hold up copy]

Lyme patients are tired of being treated as second class citizens or worse. In an apparent display of bias over time, so called Lyme experts have characterized Lyme disease as a housewives disease, a yuppie disease, or a politically correct disease to have. They have labeled patients as crazy, as faking an illness, as addicted to antibiotics or even as having antibiotic seeking behavior. 

In 2006, the tactics have changed. Patient ridicule is out, disease banishment is in. Chronic Lyme disease has been scrubbed. That’s right. The Board of Directors of a medical society and its guidelines committee have decided that chronic Lyme disease does not exist, despite the fact that the government awards grants to study chronic Lyme disease, the Red Cross excludes those diagnosed with chronic Lyme disease from giving blood, and insurers won’t sell life insurance to those diagnosed with chronic Lyme disease. 

According to today’s Lyme “experts,” chronic Lyme patients suffer from the NOT Lyme Syndrome. If you have a positive Lyme test, it’s probably a false positive, so it’s NOT Lyme. If you have Lyme symptoms without a positive test, it‘s too vague, so you have NOT Lyme. If you have a whole page of symptoms which affect many systems in your body, you probably have several different diseases, but definitely, NOT Lyme. You can’t have any treatment for NOT Lyme, but you might need medication to deal with the stress of finding someone to address your NOT Lyme problems.

According to the CDC, children ages 5-9 are at the highest risk of contracting Lyme disease. Were your children diagnosed with Lyme by a treating physician? Well, according to some experts, it’s NOT Lyme, your children most likely suffer from Munchausen’s by Proxy─an epidemic of moms who desperately seek attention for themselves by spending years running from doctor to doctor, sometimes driving for days or hopping a plane to seek help for their desperately ill children. If that is ruled out by the experts, it’s still NOT Lyme. Most likely, your children are making themselves sick and obviously want to spend years at home, alone in bed, often in great pain, being taken care of by you, and taking doses of foul tasting medicines or painful shots and IVs, while their peers play sports, sing in the chorus, go to parties, date, and even have friends. 

How many of you live south of the Mason-Dixon Line and have Lyme symptoms? It has been conclusively decreed by the experts that there is no Lyme in the South, so you have NOT Lyme. Were you bitten by something but don’t know what and have a suspicious rash and other Lyme symptoms? It’s probably a spider bite, but it’s definitely NOT Lyme. Do you have a bull’s-eye rash which is definitive for Lyme? If so, It’s probably NOT Lyme, but you need to go back to the doctor in a few weeks to see if any real symptoms develop and to have a Lyme test that misses at least 50% of Lyme cases. 

Were you bitten by a Lyme tick and had Lyme symptoms but the doctor decided that the tick wasn’t attached for more than 24-36 hours? You have NOT Lyme, since the experts know you can’t possibly develop Lyme in a shorter time period. 

NOT Lyme is a very political disease. It is so political that the good doctors who treat “Not Lyme” are often persecuted by medical boards. Days, weeks, and months are spent by medical boards nationwide on cases which they often tout are NOT about Lyme. I remember several cases in this state which were NOT about Lyme despite the fact that the word Lyme appeared 42 times in the charges against the doctors. 

The State in another case spent a half hour stating that the charges were NOT About Lyme, then produced as its first witness a “Lyme expert,” who was eventually sworn in as a “NOT Lyme” expert who then tried to give his opinion on Lyme. The State then called in another Lyme expert who gave his opinion that, because the patients came from a non-endemic state, it was, you guessed it, NOT Lyme. 

How many patients have developed chronic Lyme disease after delayed diagnosis and treatment due to a NOT Lyme diagnosis? How many patients have been denied reimbursement from their insurance companies because it’s NOT Lyme? How many of our kids have been denied educational services because it’s NOT Lyme? 

Today, we are here to banish NOT Lyme and claim back Lyme disease. We will make it happen soon as we continue to receive new support from government officials─people like US Senators Christopher Dodd (CT) and Chuck Schumer (NY); US Representatives Christopher Smith (NJ), Nita Lowey (NY), Tim Bishop (NY), Wayne Gilchrest (MD); Connecticut State Attorney General Richard Blumenthal; NY State Assembly members Miller, Bradley and Mayersohn, Pennsylvania State House Majority Caucus Leader Phillips, RI State legislators Damiani and Gallison, Massachusetts State Rep. Kartoujian, NJ Assemblyman Chivakula, New Hampshire State Senator Kenney, California State Assembly Speaker Pro Tem Leland Yee, and Florida State legislators Homan and Wise, etc, etc.

We will not allow the IDSA and their followers to take our disease away. We will not allow them to marginalize our illness by changing its name, not recommending its treatment, and not letting our doctors decide how to diagnose and treat it. With a name, chronic Lyme disease can be recognized, diagnosed, treated, researched, and eventually, even cured. NOT Lyme will never be cured but will consign its unwilling victims to a painful, debilitated existence. 

The numbers here today show that the diagnosis of NOT Lyme has made us into a strong force, a unified team with rules, players, captains, coaches, even cheerleaders. This team will move forward with its eye on the prize─ physicians being allowed to diagnose and treat chronic Lyme disease using their clinical judgment. Those who stand in our way must be moved aside using every trick in the rule book. When the whistle blows signifying the end of the game, our team will be on top, our team will win the game, our team will take the prize. 

But right now, the game is not over, so we need to play our best, and as a team, we need to send a clear message: Chronic Lyme disease exists. Chronic Lyme disease patients need treatment. Chronic Lyme disease physicians need to be able to freely treat this disease. The IDSA and every physician, government official and insurer needs to hear our message loud and clear. They need to understand, we will not go away. We will not let them roll over us. We will win the game. The smart ones will join out team now. The others will have to suffer the consequences as our Team, Team Lyme, rolls to victory!




Mt. Equinox, VT – Gear Up For Lyme Bike Climb

Remarks of Pat Smith, President, Lyme Disease Association, Inc. (LDA)

Gear Up for Lyme August 5, 2006 Mt. Equinox, Vermont

Lymeliter@aol.com 888 366 6611 www.LymeDiseaseAssociation.org

Lyme, the most prevalent vector-borne disease in the US is found in over 80 countries worldwide. About 220,000 new cases of Lyme disease develop each year, and some studies indicate 34% or more may develop into chronic disease.



The range of ticks is spreading nationwide and they now carry a whole host of TBDs which can complicate diagnosis and treatment. 

With one bite of a deer tick, you may contract not only Lyme disease but babesiosis, anaplasmosis, encephalitis, and perhaps tularemia or maybe even bartonellosis. 

With one bite of a tick on the move in the northeast, the lone star tick, you may contract Lyme-like STARI, Ehrlichiosis, tick paralysis and perhaps RMSF. 

With one bite of the American dog tick, often BTW, dismissed by the physician with a “don’t worry, that’s not a deer tick, “wave, you may contract RMSF, tularemia and perhaps Ehrlichiosis. 

From poppy-seed to sesame-seed size, the deer tick is hard to remove once it bites you, with fish hook like barbs on the hypostome it inserts into you. It secrets a cement like substance to glue itself onto you, and it secretes blood thinners to help it feed. It may also secrete chemicals to fool your immune system.

It can then transmit a bacterium that can wreak untold havoc: dozens of doctors, years of treatment, lost income, lost school time, and piles of unpaid medical bills are only part of the scenario; the lack of emphasis placed on Lyme disease by many in the medical and governmental communities is another. 

Lyme is serious. It can enter the central nervous system within hours of a tick bite. It can hide in the skin & Joints, evade the immune system, mutate, change into forms unrecognizable to conventional antibiotics and can kill cells that are supposed to kill it. It can cross the placenta, cause birth defects and death of the fetus, and it can kill those infected. 

Lyme can attack every system in the body and can mimic many other conditions including MS, ALS, CFS, FM, Parkinson’s, Alzheimer’s, and even an autism-like condition, reversed with treatment.

The bacteria can survive in stored blood under blood banking conditions, and Red Cross blood donor guidelines prohibit blood donations from those with chronic Lyme disease. 

Our children are at the greatest risk of acquiring the disease, and they may spend years out of school due to its effects. Columbia University research has demonstrated a 22 pt. IQ drop in a Lyme patient, reversed with treatment. LDA and its CT affiliate, Time for Lyme, are partnering with Columbia to open an endowed research center for studying chronic Lyme disease. We are ~$200,000 away from opening the center, thanks in part to help from Manchester Rotary which has hosted this Gear Up for Lyme event for three years now.

Unfortunately, the monies our organizations can provide are relatively small, but research requires a monetary commitment commensurate with Lyme’s severity. 

That is why we have federal companion bills S1479/ HR3427 introduced in Congress. Passage will culminate in a commitment from the government to develop a gold standard test, to evaluate the CDC surveillance criteria, to provide physician education and prevention strategies, and to form a federal task force to coordinate Lyme disease efforts. We also need to educate government officials, and to that end, we met 3 weeks ago in DC with the Director of the CDC to share our deep concerns about how Lyme is impacting patients and doctors in this country.

Remember, Lyme disease does not discriminate, nor does it confer immunity. Risky behavior includes what you are doing here today. The only thing standing between you, your family, and Lyme disease may be the power of these new monies to unlock the secrets of these insidious tick-borne diseases and to curb the spread of the tick vectors now threatening us, our families and even our pets. 

Thank you.