Sunday, February 22, 2015

Lyme Disease: Noise Makers





Lyme disease: Noise Makers

BY PAULA JACKSON JONES

 Editor’s Note: This is Part 2 of two-part series. The first part appeared in the Feb. 11 edition of The Times Record. We left off the Feb. 11 article asking “who are the people who are making all this noise for change?” and the reader was prompted to slow down and take a closer look... 
 Dr. Eva Sapi, associate professor of Biology & Environmental Science at the University of New Haven, teaches undergraduate and graduate biology courses and runs the Lyme disease lab that investigates the different forms of Lyme disease for the better understanding how Lyme can hide from the immune system as well as from antimicrobial therapies.
Dr. Brian Fallon is a professor of Clinical Psychiatry, director of the Center for the Study of Neuroinflammatory Disorders and Biobehaviorial Medicine, and Director of the Lyme and Tick-Borne Diseases Research Center at Columbia University. He was the first in the U.S. to focus research specifically on the problem of chronic Lyme disease, bringing together experts in neurology, infectious disease, immunology, genetics, neuroimaging, microbiology, neuropsychiatry, pathology, rheumatology and public health. The Center’s mission is to identify better diagnostic tests, safer and more effective treatments, and clear biomarkers that will guide treatment selection.
Dr. Daniel Cameron is a board-certified internist and epidemiologist, at the forefront of Lyme disease research and treatment for more than 25 years, and currently president of International Lyme and Associated Diseases Society. His private medical practice specializes in the diagnosis and treatment of Lyme disease and other tick-borne illnesses, providing the highest quality of care with evidence-based treatment options, as well as mentoring other medical providers with on-site training.
This is just to name a few of “those people” who are making noise about Lyme disease; highly educated physicians with decades of hands-on experience with tick-borne diseases, who put their names and reputations on the line every day, speaking out at conferences and before legislative committees about the injustices surrounding the current guidelines and treatment protocols.
You will hear mixed messages about Lyme disease treatment. You will hear one local doctor prescribe one-pill, another prescribe 14 pills and yet another prescribe 21 or 28 days’ worth of pills. You may go back with continuing symptoms and be told that you are “cured,” no longer infected with Lyme and that it must be something else, then, you’ll hear that your neighbor was given another round of pills for their lingering symptoms. (NOTE: The CDC states that there is no existing test that proves that the bacteria have been fully eradicated.)
The frustration that one faces when dealing with Lyme disease is overwhelming and as one who found herself hitting a wall over and over again, I had to slow down and really listen to what was being said about this disease. I was having trouble getting my doctor to listen to me, to diagnose me and to properly treat me. I had to weigh my options; after all, 300,000-plus new cases of Lyme disease a year had merit and I found that all 300,000-plus of those voices all had the same voice. There was a consistent, uniformed message coming from every outlet with connections to Lyme and tick-borne diseases. That message was further backed up by real people, with real stories of real symptoms, failed treatments, faulty testing and misdiagnoses.
For me, slowly the scales were tipping and soon I knew which side of the fence I stood on and that was further cemented by visits to a medical provider, with decades of experience in the field of tick-borne diseases, who understood how I was feeling, who understood my symptoms, who knew what tests to run and decipher those results, which gave direction on how to treat me and the complexity of this “infectious,” “epidemic,” “fastest growing” tick-borne disease that I was infected with. END OF MIXED MESSAGES. I was finally being heard and understood and had hope restored for the first time in years that I could possibly get better!
What the CDC pushes, what most primary care doctors follow, are outdated guidelines and treatment protocols that are no match for an disease that has evolved into over 100 U.S. and 300 worldwide strains of tick-borne bacterium. Where I live, the cases of tick-borne disease grow higher every year, blamed on the infestation of ticks. That doesn’t explain why from the cases reported, too many go on to become chronic and left without answers or direction. Furthermore, information about the transmission of this infectious disease evolving remains downplayed. It is carried by more than one species of tick (birds, mosquitoes and rodent have been found to carry it); it is transferable via utero from mother to unborn child (which impairs normal development); it has been found to be sexually transmitted (case studies have shown active bacteria present in semen and vaginal fluids). These are just some of the things that are being researched and studied on this side of the fence by experts in their respective fields, things that European researchers have known for quite a while, and things the CDC prefers to keep us in the dark about until they are good and ready to disclose in another Press Release.
So here are some questions to ponder:
. Why would the CDC want to downplay the very disease that they call “infectious, epidemic and fastest growing”?
. Why would they hold steadfast to antiquated guidelines and protocols, knowing that the disease is evolving and has surpassed the HIV/AIDS count?
. Why are they not willing to acknowledge that broken surveillance, diagnostic and treatment measures are contributing to the ever growing nationwide epidemic?
Now that you have slowed down to listen, what are you hearing?

Dr. Brian Fallon is a professor of Clinical Psychiatry, director of the Center for the Study of Neuroinflammatory Disorders and Biobehaviorial Medicine, and Director of the Lyme and Tick-Borne Diseases Research Center at Columbia University. He was the first in the U.S. to focus research specifically on the problem of chronic Lyme disease, bringing together experts in neurology, infectious disease, immunology, genetics, neuroimaging, microbiology, neuropsychiatry, pathology, rheumatology and public health. The Center’s mission is to identify better diagnostic tests, safer and more effective treatments, and clear biomarkers that will guide treatment selection.
Dr. Daniel Cameron is a board-certified internist and epidemiologist, at the forefront of Lyme disease research and treatment for more than 25 years, and currently president of International Lyme and Associated Diseases Society. His private medical practice specializes in the diagnosis and treatment of Lyme disease and other tick-borne illnesses, providing the highest quality of care with evidence-based treatment options, as well as mentoring other medical providers with on-site training.
This is just to name a few of “those people” who are making noise about Lyme disease; highly educated physicians with decades of hands-on experience with tick-borne diseases, who put their names and reputations on the line every day, speaking out at conferences and before legislative committees about the injustices surrounding the current guidelines and treatment protocols.
You will hear mixed messages about Lyme disease treatment. You will hear one local doctor prescribe one-pill, another prescribe 14 pills and yet another prescribe 21 or 28 days’ worth of pills. You may go back with continuing symptoms and be told that you are “cured,” no longer infected with Lyme and that it must be something else, then, you’ll hear that your neighbor was given another round of pills for their lingering symptoms. (NOTE: The CDC states that there is no existing test that proves that the bacteria have been fully eradicated.)
The frustration that one faces when dealing with Lyme disease is overwhelming and as one who found herself hitting a wall over and over again, I had to slow down and really listen to what was being said about this disease. I was having trouble getting my doctor to listen to me, to diagnose me and to properly treat me. I had to weigh my options; after all, 300,000-plus new cases of Lyme disease a year had merit and I found that all 300,000-plus of those voices all had the same voice. There was a consistent, uniformed message coming from every outlet with connections to Lyme and tick-borne diseases. That message was further backed up by real people, with real stories of real symptoms, failed treatments, faulty testing and misdiagnoses.
For me, slowly the scales were tipping and soon I knew which side of the fence I stood on and that was further cemented by visits to a medical provider, with decades of experience in the field of tick-borne diseases, who understood how I was feeling, who understood my symptoms, who knew what tests to run and decipher those results, which gave direction on how to treat me and the complexity of this “infectious,” “epidemic,” “fastest growing” tick-borne disease that I was infected with. END OF MIXED MESSAGES. I was finally being heard and understood and had hope restored for the first time in years that I could possibly get better!
What the CDC pushes, what most primary care doctors follow, are outdated guidelines and treatment protocols that are no match for an disease that has evolved into over 100 U.S. and 300 worldwide strains of tick-borne bacterium. Where I live, the cases of tick-borne disease grow higher every year, blamed on the infestation of ticks. That doesn’t explain why from the cases reported, too many go on to become chronic and left without answers or direction. Furthermore, information about the transmission of this infectious disease evolving remains downplayed. It is carried by more than one species of tick (birds, mosquitoes and rodent have been found to carry it); it is transferable via utero from mother to unborn child (which impairs normal development); it has been found to be sexually transmitted (case studies have shown active bacteria present in semen and vaginal fluids). These are just some of the things that are being researched and studied on this side of the fence by experts in their respective fields, things that European researchers have known for quite a while, and things the CDC prefers to keep us in the dark about until they are good and ready to disclose in another Press Release.
So here are some questions to ponder:
. Why would the CDC want to downplay the very disease that they call “infectious, epidemic and fastest growing”?
. Why would they hold steadfast to antiquated guidelines and protocols, knowing that the disease is evolving and has surpassed the HIV/AIDS count?
. Why are they not willing to acknowledge that broken surveillance, diagnostic and treatment measures are contributing to the ever growing nationwide epidemic?
Now that you have slowed down to listen, what are you hearing?
- See more at: http://m.timesrecord.com/news/2015-02-20/Commentary/Lyme_disease_Noise_Makers.html#.VOqoaC5IKmV
http://www.timesrecord.com/news/2015-02-20/Commentary/Lyme_disease_Noise_Makers.html
Dr. Brian Fallon is a professor of Clinical Psychiatry, director of the Center for the Study of Neuroinflammatory Disorders and Biobehaviorial Medicine, and Director of the Lyme and Tick-Borne Diseases Research Center at Columbia University. He was the first in the U.S. to focus research specifically on the problem of chronic Lyme disease, bringing together experts in neurology, infectious disease, immunology, genetics, neuroimaging, microbiology, neuropsychiatry, pathology, rheumatology and public health. The Center’s mission is to identify better diagnostic tests, safer and more effective treatments, and clear biomarkers that will guide treatment selection. - See more at: http://m.timesrecord.com/news/2015-02-20/Commentary/Lyme_disease_Noise_Makers.html#.VOqMjS5IKmU
Dr. Brian Fallon is a professor of Clinical Psychiatry, director of the Center for the Study of Neuroinflammatory Disorders and Biobehaviorial Medicine, and Director of the Lyme and Tick-Borne Diseases Research Center at Columbia University. He was the first in the U.S. to focus research specifically on the problem of chronic Lyme disease, bringing together experts in neurology, infectious disease, immunology, genetics, neuroimaging, microbiology, neuropsychiatry, pathology, rheumatology and public health. The Center’s mission is to identify better diagnostic tests, safer and more effective treatments, and clear biomarkers that will guide treatment selection.
Dr. Daniel Cameron is a board-certified internist and epidemiologist, at the forefront of Lyme disease research and treatment for more than 25 years, and currently president of International Lyme and Associated Diseases Society. His private medical practice specializes in the diagnosis and treatment of Lyme disease and other tick-borne illnesses, providing the highest quality of care with evidence-based treatment options, as well as mentoring other medical providers with on-site training.
This is just to name a few of “those people” who are making noise about Lyme disease; highly educated physicians with decades of hands-on experience with tick-borne diseases, who put their names and reputations on the line every day, speaking out at conferences and before legislative committees about the injustices surrounding the current guidelines and treatment protocols.
You will hear mixed messages about Lyme disease treatment. You will hear one local doctor prescribe one-pill, another prescribe 14 pills and yet another prescribe 21 or 28 days’ worth of pills. You may go back with continuing symptoms and be told that you are “cured,” no longer infected with Lyme and that it must be something else, then, you’ll hear that your neighbor was given another round of pills for their lingering symptoms. (NOTE: The CDC states that there is no existing test that proves that the bacteria have been fully eradicated.)
The frustration that one faces when dealing with Lyme disease is overwhelming and as one who found herself hitting a wall over and over again, I had to slow down and really listen to what was being said about this disease. I was having trouble getting my doctor to listen to me, to diagnose me and to properly treat me. I had to weigh my options; after all, 300,000-plus new cases of Lyme disease a year had merit and I found that all 300,000-plus of those voices all had the same voice. There was a consistent, uniformed message coming from every outlet with connections to Lyme and tick-borne diseases. That message was further backed up by real people, with real stories of real symptoms, failed treatments, faulty testing and misdiagnoses.
For me, slowly the scales were tipping and soon I knew which side of the fence I stood on and that was further cemented by visits to a medical provider, with decades of experience in the field of tick-borne diseases, who understood how I was feeling, who understood my symptoms, who knew what tests to run and decipher those results, which gave direction on how to treat me and the complexity of this “infectious,” “epidemic,” “fastest growing” tick-borne disease that I was infected with. END OF MIXED MESSAGES. I was finally being heard and understood and had hope restored for the first time in years that I could possibly get better!
What the CDC pushes, what most primary care doctors follow, are outdated guidelines and treatment protocols that are no match for an disease that has evolved into over 100 U.S. and 300 worldwide strains of tick-borne bacterium. Where I live, the cases of tick-borne disease grow higher every year, blamed on the infestation of ticks. That doesn’t explain why from the cases reported, too many go on to become chronic and left without answers or direction. Furthermore, information about the transmission of this infectious disease evolving remains downplayed. It is carried by more than one species of tick (birds, mosquitoes and rodent have been found to carry it); it is transferable via utero from mother to unborn child (which impairs normal development); it has been found to be sexually transmitted (case studies have shown active bacteria present in semen and vaginal fluids). These are just some of the things that are being researched and studied on this side of the fence by experts in their respective fields, things that European researchers have known for quite a while, and things the CDC prefers to keep us in the dark about until they are good and ready to disclose in another Press Release.
So here are some questions to ponder:
. Why would the CDC want to downplay the very disease that they call “infectious, epidemic and fastest growing”?
. Why would they hold steadfast to antiquated guidelines and protocols, knowing that the disease is evolving and has surpassed the HIV/AIDS count?
. Why are they not willing to acknowledge that broken surveillance, diagnostic and treatment measures are contributing to the ever growing nationwide epidemic?
Now that you have slowed down to listen, what are you hearing?
———
- See more at: http://m.timesrecord.com/news/2015-02-20/Commentary/Lyme_disease_Noise_Makers.html#.VOqMjS5IKmU