Original post about this symposium: http://lymebites.com/a-forum-on-tick-borne-diseases-whats-next/Itinerary:Schedule ~ Please note that all times are approximateArthur Zankel Music Center9:00 Morning Session Opens Christina T. Fisk, Co-Chair Organizing CommitteeWelcome to LymeNEXT Congressman Chris Gibson, 20th Congressional District, NY9:15 Keynote AddressInto the Woods: The Patient Journey through Lyme DiseasePamela Weintraub, Executive Editor, Discover Magazine and author of Cure Unknown: Inside the Lyme Epidemic10:00 The Scope and Economic Burden of Lyme DiseaseAn Epidemic of Lyme Disease? Holly AhernThe Economic Impact and Burden of Lyme Disease Lorraine Johnson11:00 Break11:15 A Diagnosis that Fits the Disease – Multiple Chronic Infectious Disease Syndrome (MCIDS) Richard I. Horowitz, MDNoon Lunch BreakAn optional one-price ($10) dining option is available for Forum attendees. Lunch will be held in the Murray-Aikins Dining Hall on the Skidmore Campus. See program for menu.1:20 Afternoon Session Opens Christina T. Fisk, Co-Chair Organizing Committee1:30 Protecting Physicians who Treat Lyme Disease Daniel Cameron, MD2:00 Preventing Transfusion-Transmitted Babesiosis David Leiby, PhD2:30 Break2:45 New Methods for Lyme and TBD Detection Ahmed Kilani, PhD3:15 A “Manhattan Project” for Lyme Disease Kenneth Liegner, MD4:00 Closing Remarks Congressman Chris GibsonA Forum on Tick-Borne Diseases – What’s NEXT?Skidmore College Saratoga Springs, New YorkMay 21, 2012Honorary Chairman: Congressman Chris Gibson
LIVE VIDEO STREAMINGHonorary Chairman Congressman Chris Gibson (NY-20) and the LymeNext Organizing Committee invite all individuals, communities, organizations, or enterprises with interests pertaining to Lyme disease and other tick-borne diseases to join the Congressman for a unique public forum he will be hosting in the Zankel Music Center, Skidmore College in Saratoga Springs, New York, on May 21, 2012 from 8:00 am to 5:00pm.
The Lyme Next Forum will be broadcast live over the Internet this Monday starting at 9:00 am. The website you need to go to is:A link to this and detailed information is also available at the Lyme Forum website:
Posts Tagged ‘Lyme Disease Awareness’
A Forum on Tick-Borne Diseases – What’s NEXT?
Skidmore College Saratoga Springs, New York May 21, 2012
Honorary Chairman: Congressman Chris Gibson
Please forward this invitation (4/6/12)
A Special Invitation
Congressman Chris Gibson (NY-20) invites all individuals, communities, organizations, or enterprises with interests pertaining to Lyme disease and other tick-borne diseases to join him for a unique public forum he will be hosting in the Zankel Music Center, Skidmore College in Saratoga Springs, New York, on May 21, 2012 from 8:00 am to 5:00pm.
The event, entitled A Forum on Tick-Borne Diseases – What’s NEXT? seeks to focus public awareness on the future of these difficult diseases. A group of speakers, leaders in their fields, will present forward thinking, problem-solving proposals to a panel of policymakers from both private and public sectors about what can reasonably happen NEXT to advance the cause of improving the lives of people suffering with Lyme disease and other TBDs.
Pamela Weintraub, renowned author of Cure Unknown, and Executive Editor of Discover, will be the keynote speaker for this event. Pam will speak to the multi-dimensional nature of this extraordinary subject, from the patients to the politics, from the science to suppositions that define this stunning medical debacle.
Dr. Richard Horowitz, internationally renowned clinical physician and consultant in the field of Lyme and tick-borne diseases has been working with patients for over twenty years. He has seen the evolution of the diseases from the clinical perspective, and will present a proposal for a paradigm-shifting approach to the diseases that could encourage new perspectives, new synergies, and new research in this difficult subject.
Dr. Daniel Cameron, former President of the International Lyme and Associated Diseases Society, an active clinical physician, researcher, and vocal advocate for Lyme patients and improved Lyme policy in the U.S., Dr. Cameron will speak to the extreme difficulties the current medico-political environment imposes on the doctors who aggressively treat Lyme disease.
Dr. Kenneth Liegner, Dr. Liegner is a Board Certified Internist with additional training in Pathology and Critical Care Medicine, practicing in Pawling, New York. He has been actively involved in diagnosis and treatment of Lyme disease and related disorders since 1988. Dr. Liegner will present his ideas for a comprehensive plan for dealing with the spectrum of problems that are the “Lyme issue” as we move into the future.
Lorraine Johnson, J.D., MBA, one of the best known and most highly regarded advocates for Lyme patients, is an attorney advocate on issues related to the medico-legal and ethical aspects of Lyme disease and has published over 30 peer-reviewed articles on this topic. She is the Chief Executive Officer of LymeDisease.org, and is a director and an officer of the International Lyme and Associated Diseases Society. She will speak on the Burden of Illness, an in-depth study of what the costs are to people who have Lyme and other tick-borne diseases and to their communities, and she will recommend research paths forward to address these issues. Lorraine authors the Lyme Policy Wonk blog, on the lymedisease.org site.
Holly Ahern, associate professor of Microbiology at SUNY Adirondack, will present the findings of her 2011 research study on the number of cases of Lyme disease that go uncounted in our “official” statistics. Most cases of Lyme disease are NOT reported, and this number of “invisible” cases, will ultimately have a significant impact on all our communities. Multiplying the “undocumented” cases with the financial burdens of the disease foreshadows a public health crisis on the horizon.
Dr. Ahmed Kilani, President, Founder, and Director of Clongen Labs, will discuss new laboratory methods to enhance the detection sensitivity ini the testing process.
Dr. David Leiby, Head of Transmissable Diseases at the Red Cross, will speak on the concerning and challenging issue of Babesiosis now being found in the blood supply.
Dr. Edward Breitschwerdt, DVM, of North Carolina State University, will address the emerging challenges of Bartonella, one of the co-infections that is being observed with increasing frequency.
Lyme victims, their families and friends, advocacy groups, medical professionals, business professionals, government agencies, policy makers, and others associated with these diseases or their impact on people are urged to attend to both hear what the speakers are proposing as well as to demonstrate to the public, to government, and to the media that there are a LOT of victims of tick-borne diseases.
There is no cost to attend the forum. Information about how to pre-register and about accommodations can be found at www.lymenext.org.
Meet my beautiful friend Birdie…
One day soon we’ll take on the world again. Keep your head up, sister.
“I know why the caged bird sings, ah me,
When his wing is bruised and his bosom sore,
When he beats his bars and would be free;
It is not a carol of joy or glee,
But a prayer that he sends from his heart’s deep core,
But a plea, that upward to Heaven he flings –
I know why the caged bird sings.”
(Please stay with me here and read this all the way through)
As you all know, I’m currently planning an event called “F U Lyme” at The Other Bar this Thursday, to help raise money for a lady by the name of Elizabeth Chalker. I had the privilege of hearing Elizabeth Chalker’s story from my dear friend and advisor, Helen Raser. What you need to know about Elizabeth is this: She’s 39 years old, was once an accomplished (PhD) Forensic and Sports Psychologist and athlete. Her passion was helping at risk youth and their families, often without payment. Currently, Elizabeth is dying from Late Stage Lyme Disease & Co-Infecions, as well as Lyme-induced Endometriosis, which have virtually taken over her body. Multiple organs and systems are shutting down. Due to medical ignorance surrounding Lyme disease, she has been suffering for over 20 years, debilitated the last 7 years. Without appropriate treatment she will die an agonizing death.
Elizabeth’s body is wracked with pain 24 hours a day – uncontrollable muscle twitches – daily migraines – seizures – convulsions – constant nausea and dizziness – extreme light and sound sensitivity – excruciating bone and organ pain – inability to sleep more than ½ hour at a time – inability to stand long without blacking out – And with virtually no family to help, she lives alone in a cold, dark apartment, in constant agony. Elizabeth’s only chance for the life saving treatment she desperately needs is in Washington State . But treatment will take years and hundreds of thousands of dollars.
In spite of this indescribable torture, Elizabeth has the most amazingly strong spirit and huge heart. She will help anyone who reaches out to her, though no one can help her. Her dream is to be able to dedicate her life to helping others and make a difference in the world. Helping Elizabeth would be like helping thousands. The world needs Elizabeth Chalker.
Although we’re throwing this bash in an attempt to raise money for Elizabeth, it’s also about raising awareness of Lyme. What you really need to know about it, is this: Lyme disease affects MILLIONS around the world, in every state, and on every continent. It is the fastest growing infectious disease, growing at a rate of over 39%, and is 10 times more prevalent than HIV / AIDS. It mimics, causes or contributes to more than 300 other disease and conditions and is frequently misdiagnosed as MS, Lupus, Parkinsons, ALS, Alzeimers, Arthritis, Rheumatoid Arthrits, Fibromyalgia, Chronic Fatigue Syndrome, Psychiatric Disorders, even Cancer, and much more. It can affect every single organ and system in the body, thus causing neurological, cardiac, gastrointestinal, vision, hearing, psychiatric, and many other issues. Yet people are misdiagnosed every day and left to suffer mercilessly and even die.
The State Attorney General of Connecticut launched an investigation of the IDSA Lyme Panel and determined that their guidelines for diagnosing and treating lyme are FLAWED and that panel members had conflicts of interest (IE: ties to insurance companies, pharmaceutical companies, patents, etc). They were ordered to form a new panel and to re-do the guidelines. In the meantime, doctors are operating under those flawed guidelines, denying that Chronic or Late Stage Lyme even exist and that Lyme Disease is rare and easy to treat. And doctors who are willing to become educated and administer proper treatment risk losing their licenses and other penalties. Because of politics, greed and egos, millions of lives are being destroyed. One extremely important life in particular is being destroyed…
Now, onto why this event is so personal for me and back to the caged bird reference… Seven years ago, I met a boy that would change my life, as do most significant people one comes across in this great journey. John became my best friend and soon after, much more than that. He introduced me to a world I never knew existed, whilst also introducing me to one of the most incredible friends I’ll ever have. Life only affords you so many people in life who will actually reciprocate your love for them. Through John, I found an entire family willing to do just that, but more than that, I found my Birdie, the inspiration to all of this madness, to F U Lyme, to the reasons sometimes I find it hard to be empathetic to small problems, to the reasons I only allow myself to be down for only a bit, to the reasons I see the world sometimes with TWO sets of eyes, and to the reason I feel things with TWO hearts… because even though you’re not always able to be with me, Terd, I assure you that you are with me more than you’ll ever know. And while your physical body has not allowed you to experience the world like a 23 year old should, you’ve been with me in spirit on so many occasions.
Cue music, world. Meet Teri Danielle Raser. She’s the most beautiful friend I’ve ever had; has the voice of an angel, or of the Jenny Lewises in the world; the innocent laughter of a kid’s first reaction to the tea cup ride at Disney; a heart the size of Texas, scratch that, more like that of the size of all of Africa; dance moves better than Ashlee Simpson (inside joke); and a wit about her that even Rainn Wilson couldn’t contest on his Twitter page. Aside from all of these amazing attributes, the greatest thing about Teri is that she is exactly that friend every friend wants in life, the one who treats you like you want to be treated, the one that makes you a better person just by being in her presence. This is who she’s always been to me… ever since I met her on that sweet summer day 5 years ago.
Since then, Bird & I have shared clothes, gossip, deepest-darkest secrets, belly-aching laughter, beds, concerts – live & in the car, a room for a summer, and the best of times… but most recently, we’ve shared some of the worst. In February of 2007, Teri was struck with something we spent day in and day out chasing, trying to figure out, to understand, only to be misdiagnosed for months on end until finally determining that she, my very best friend, was suffering from Lyme Disease which has since proven to be the biggest battle she, her family, and her friends have had to fight yet. (Read more of her story from her brother’s eyes here: http://gospeedraser.com/2009/02/22/under-our-skin/ & http://gospeedraser.com/causes/).
For the last 3.5 years, Bird has endured treatments after treatment, IV therapy, medication post medication post medication, and days and nights on end spent lying in bed, unable some days to even walk down the stairs for family dinner. Her symptoms match closely to those of Elizabeth’s listed above. Too physically sick to stay on her own, Teri was forced to leave Miami mid-sophomore year, at the height of her college career, dominating UM’s best blog, working for a couture fashion designer, all the while owning the Miami social scene. And now her life consists of TV shows on DVR, a very cute and large mini-Shetland look-alike pup Ziggy & his big but smaller brother Hurley, adorable cousins Liv & Iz to brighten the day, occasional phone calls or texts from friends, daily visits from Eva/Chris/John/her parents,.. and finally Grandpa Joe sessions with me when time & her health allows.
The point of all of this story-telling is simply this: if you’re in the area, I’m asking you ever so kindly to show your face at this F U Lyme event this Thursday, July 15th from 7-10 PM at The Other Bar, to bring your $5 and if you have more to spare, please do so. (http://www.facebook.com/event.php?eid=142167449131064)
If you don’t live in the area, I’m asking you to donate. Contact me about how. Contact John. Contact Mrs. Helen. If you’re in the area and can’t make it OR if you’re not in the area and can’t donate, fine, fair enough. I understand. Just let this all soak in.
For 5 minutes, think about how fragile life is; how drastically it can change in the blink of an eye or in a matter of a night in Teri’s case; how no matter how bad you might think you have it, someone else probably has it worse; how the Government needs to recognize that Lyme Disease is an epidemic… that this isn’t just a story you heard and need to prove true through Snopes.com. This is real life. And for me, it’s personal. Really personal. So take your 5 minutes, and help me raise awareness, for Elizabeth Chalker, for Teri Raser, for all Lyme victims in the world… and for all of those people in their lives affected by it.
Bird, you once told me I was never allowed to leave your life. I promise you, on everything, I’m not going anywhere. Not now, not ever. I’ll be here every day, every single day… until you can face the sunshine again. And I promise you the sun will shine again. Although I don’t understand why this happened nor do I like whatever purpose this all serves, if ever I believed someone had the strength to turn it all around, I would place bets on you. High bets, at that. And until then, I will happily grandpa joe it right beside you, making bucket lists the world will be envious of, crying when you feel compelled to do so, and laughing obnoxiously loud just when you need it.
Although your body might make you a caged bird, I hear your song and I know why you sing, and one day soon, you will find freedom again. Please know that but most of all, believe it. Believe it with all your heart, because I believe it with all of mine.
If you want to purchase them here are the prices-
* 20 for $50 ($2.50 each)
* 10 for $30 ($3.00 each)
* 5 for $17.50 ($3.50 each)
* Under 5 = $4.00 each
This is one of many “Lyme Catch-22′s” I’ve noticed with this disease, but this is what I’ve been picking up on this week and I wanted to talk about it.
The Paint May Lyme Green campaign, as well as all the other efforts for Lyme disease awareness in May have definitely been successful. Besides the PSA’s being shown across the country, and the increase in dialogue about Lyme disease, there have been the actual personal stories we’ve been hearing from people who were tested and found out they had Lyme disease because they were made aware through the awareness campaigns.
When this began I was ecstatic. Not to know people had Lyme, because that’s not something to be happy about, but because it became clear that all the hard work we put into raising awareness was paying off as people were letting us know that thanks to us they had found out they had Lyme disease, and could now be treated.
On a personal level, one of my closest friends was diagnosed about 2 months ago with Lyme. It took her 9 months and several Dr’s before she could finally get the testing she needed to confirm she did indeed have Lyme. She became concerned as she learned alongside me with my illness and realized how many of the symptoms I mentioned that she also had. This came after 20 years of Fibromyalgia, and then a diagnosis of Lupus. Those of us in the Lyme community will tell you those are two of the diseases that should be red flags for the possibility of Lyme disease. During May this friend’s adult daughter was also diagnosed. I was so happy for my friend to have an answer to years of pain and confusing medical problems, but then I almost felt guilty when her daughter tested positive. Without the awareness we were spreading, she may not have known to even get tested for Lyme. But to see it hit two people in one family was heartbreaking for me. But as I spoke with them both I continued to keep as positive as possible, letting them both know somehow we would all get through this. Everything works out…not always how we want, but it always works out.
While that was going on I thought of my Aunt and Uncle, both of whom had “inconclusive” Lyme test results in the past, even while seeing ticks and having to pull one out. They live in the mountains, surrounded by wildlife. They were both told they were negative, but because of misinformation. Many doctors don’t realize that being CDC negative does not necesarrily mean being negative for Lyme. That’s a lesson most of us have had to learn the hard way. (It clearly states on the lab results that the CDC qualifications for being positive are for statistical purposes only, not for diagnosis.) When they reviewed their actual test results it was clear there were positive bands. A positive band is indicative that there is either a Lyme infection or at the very least there has been exposure to Lyme. (I am not a doctor, this is not my area of expertise, this is me summing up what I’ve learned in the past year…but please know that only a Lyme Literate Doctor can diagnose and properly analyze Lyme results.)
The point being that in the back of my head the fact loomed that it was very possible my Aunt and/or Uncle could also have Lyme and may therefore also need treatment. We would joke that if more than one of us needed treatment we’d all end up living together to be able to pay for it. But as I watched my friend and her daughter enter this arena, the thought was always in the back of my head.
In addition I have made many friends in the Lyme community who are in this same boat. Some who come from entire families infected with Lyme and/or co-infections. I saw what it would do to those families. While I saw this, and was aware of it happening, I wasn’t experiencing it first hand like I was with my friend and her daughter.
The last week has been an influx of feedback from people involved in the Paint May Lyme Green awareness campaign telling us stories of people who heard the message and went on to be diagnosed with Lyme because of it. As the numbers increased I went from being ecstatic at knowing our message had gotten out there, to feeling a little sick over the fact that so many people were having to face the reality of Lyme disease. And if there’s one thing I hope I’ve conveyed in my writing about my disease it is that it is not a pretty reality. It downright sucks to be honest.
I kept reminding myself that no matter how high the numbers of people testing positive, it was for the good because these people had a shot at getting treated before they became completely disabled, which is what happened to me. That was why I became involved in Lyme awareness in the first place, so that others would not have their lives pulled out from under them the way I did.
But that all changed a lot today when my Mom called me in to her room and handed me a piece of paper. As I began to read it my stomach seemed to lurch as I came across the line I was dreading, Lyme – Positive. It took a minute to really sink in what I was reading, but my mother has indeed tested positive for Lyme disease.
Now, for those who question me when I say that the current laboratory tests for Lyme are inaccurate, you need to know that she has been tested at least twice since I became sick, and both of those tests were negative. This third one was CDC positive, and no question about it. (The NYS Dept of Health statistics for LabCorp testing for Lyme is a 34% accuracy rate.)
It was kind of a slap in the face for me to realize the woman who has been fighting so hard for me as my biggest advocate and supporter, the woman who opened her home up to me when Lyme made it impossible to have my own home anymore, the woman who is so willingly spending her nest egg so I can get the treatment I need to get my life back again, now has to face the same disease for herself that she has fought so hard against for me.
We will face it, deal with it and find a way through it. The messages I kept giving my friend and her daughter have been ringing in my own mind all day for myself, somehow it will all work out and we will get through this. But it is certainly not fair that so many more people have to deal with the living hell the rest of us with this disease have to go through.
So this is where I find one of those Lyme Catch-22′s. While I am so happy the message of awareness is spreading and people are taking that message to find out earlier instead of later that they have the disease, with every person diagnosed I feel a twinge of sadness at the success of the awareness campaigns, because I know what it means to each of those people who now have to fight this disease.
I found out when it was too late to get treated and still go on with my life. By the time I found out I had Lyme disease, I was completely disabled and watching the life I knew fall through my hands as if my whole life had turned to dust. So the blessing in all of this is many of these people are finding out before they get to that point, and that is a wonderful thing.
But it just reaffirms my anger that this disease has been allowed to run rampant for so long. That the medical community in general has ignored the reality in front of their own faces. That we have allowed business men and women dictate our medical care instead of the doctors who actually know what they are doing. It disgusts me that the corruption and greed on so many levels has allowed this disease to evolve over the last 30 years to the point where we are now.
I have to just take a deep breath (or perhaps I should take several) and put that anger back into my determination to raise awareness and save lives. Every day this fight gets more and more personal, and today it took on a whole new level of personal as I read my mother’s Lyme results.
My commitment is stronger than ever now to this fight. It’s no longer just a fight for myself, it’s for all the others who have to face this new reality. Please join me…I can’t do it alone. The Lymenaide Awareness Team cannot do it by ourselves. We need each and every one of you. Don’t do it for me….do it for your loved ones, because any one of them may be the one who will need you to fight for them.