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

Thursday, February 12, 2015

Current Lyme Disease Legislation NewsFlash




The MAINE LYME COMMUNITY needs your help now more than ever!
MAINE HP289, LD422 has been presented and will go before the Labor Committee.
For bill language: http://www.mainelegislature.org/legis/bills/getPDF.asp…
HOW CAN YOU HELP?
Contact your local Representatives and Senators, tell them WHY this bill is so important for the Maine Lyme community, why we need our Doctors protected against disciplinary action so that they can treat us here in Maine.
Find your local representative (by town and by county):
https://www1.maine.gov/legis/house/townlist.htm
http://legislature.maine.gov/house/hcounty.htm
SHARE your personal story with them ~ ask them for their support, ask them to step up and consider co-signing, ask them to talk to their fellow committee members about why this bill is so important.

 



SHARE THIS WITH YOUR FRIENDS AND FAMILY!!!
This bill needs as much support as we can give it !!!

Wednesday, February 11, 2015

Lyme Disease: Mixed Messages

http://www.timesrecord.com/news/2015-02-11/Commentary/Lyme_Disease_Mixed_Messages.html

Photograph of Angele Rice Co-Founder of MLDSE

Lyme Disease: Mixed Messages

BY PAULA JACKSON JONES
Editor’s Note: This is part 1 of a 2-part commentary.
How frustrating are mixed messages? Not only to the one on the receiving end of the message but also for the one in the middle who is supposed to be doing something about it. What does one gain from sending a mixed message?
Where's the story? 1 Points Mentioned
Well, let’s ask the Centers for Disease Control, whose official position is to survey, regulate and use confinement protocols with regards to infectious diseases. Yes?
Well, what if said conglomerate was to send a mixed message, calling a disease “infectious,” “epidemic,” and “fast growing,” but doing next to nothing to contain or stop it from growing. Now the general public hears the words “infectious,” “epidemic,” “fastest growing” and that is enough to warrant concern...or is it? Because we, the public, think that we’ve been exposed to this “fastest growing, infectious epidemic” disease and yet when we seek medical attention, we begin to receive mixed messages. Those mixed messages come in many forms:
. Lack of knowledge and education from our trusted medical provider
. Sporadic symptoms we’re experiencing, confusing our doctor
. Misdiagnosis after misdiagnosis
. Delayed diagnosis leading to further damage
. Faulty testing and inadequate treatment protocols
. Antiquated guidelines
So, for the one who has been exposed to this “fastest growing, infectious epidemic” disease, they begin to hear mixed messages. Their trusted medical provider tells them that either they don’t have it or that they might have it or that they do have it and take pills for (x) number of days, that they will be “cured.” But this patient is also hearing on the news, reading in the papers and on social media information that is contradicting what their trusted medical provider is telling them. So what are they to believe? After all, their doctor is a highly trained medical professional who has gone to medical school, has practiced medicine for a number of years and, who has earned their trust by treating them and their family’s previous ailments with success. On the other side of the fence is a group of people, strangers to most, who are sharing some very disturbing and very contradicting information. Mixed messages.
The CDC likes to portray this group as fanatical, as people suffering from mental health issues (they like to say that we have depression and liken our pain to that diagnosis and try to pawn us off on a counselor). They will even go as far as to acknowledge our lingering symptoms, but lay claim that we are no longer suffering from Lyme or any sort of tickborne infection and that in time, we will all get better. They dismiss us and write us off.
Now this same CDC group works closely with the Infectious Disease Society of America, who has active case studies about other infectious diseases, including how the disease evolves; they even rationalized the need for new vaccines and updated treatments in order to keep up with the evolution of said diseases. They are all over influenza and the measles, for example. So much noise has been made about influenza and the need for prevention to control the spread of contact from person to person. They once made as much noise about HIV and AIDS, first segregating the disease to the homosexual community while putting the rest of the world at ease, all the while IV drug users and promiscuous sexual partners had no idea they were at risk. Mixed messages.
One would think that a governed body of minds would have learned from past mistakes and even recent ones (i.e, Ebola) and would act on the side of public safety rather than pride. And, that they would take in all evidence from both sides of the argument and act for the betterment of the people that they are supposedly here to serve and protect. What ever happened to FIRST DO NO HARM? Oh, they claim it’s science that is guiding their research and decisions. However, discoveries have uncovered that the self-serving reasoning goes far deeper and into much darker crevices.
In August 2013, the CDC went public with a Press Release, acknowledging that the number of Lyme Disease cases here in the United States was far greater than they had previously reported and possibly even higher, admitting that their surveillance methods were never meant for epidemic proportions. Their word, “epidemic.” Again, mixed messages.
So, is Lyme Disease the “fastest growing, infectious epidemic” disease since HIV/AIDS? To the parties that are fighting for changes to the current system of guidelines and protocols, fighting for better diagnostic and treatment options, fighting for their lives and the lives of their friends and family members; that would be a resounding and unanimous “YES”!!
And who are the people who are making all this noise for change? To the one unaffected by Lyme disease, it would appear to be a bunch of bitter members of a social grass roots community, out to stir the pot and cause trouble, or protesters just looking for some attention. But stop for a minute and look closer. Look beyond the person holding the protest sign. Look beyond the people behind the table at a local Lyme disease event. Look beyond the people in your home town who are posting about Lyme Disease on social media. When you slow down and take a closer look, you will be surprised at what you find!

Next week: Part 2 — Lyme Disease, Mixed Messages: Noise Makers
Written by Paula Jackson Jones 
Published by The Brunswick Times Record 






Photograph and mixed media by Angele Rice Co-Founder of MLDSE

Wednesday, February 4, 2015

Rockland Guest Speaker Dr. Keelyn Wu, DO



Dr Keelyn Wu, DO gives An Overview of Diagnosing and Treating Chronic Lyme Disease

The Midcoast Lyme Disease Support & Education group is pleased to announce that Dr. Keelyn Wu, DO, will be speaking at their next Lyme Disease support meeting on Feb 11th from 6-8pm at the Midcoast Recreation Center on Route 90 in Rockport. His topic of discussion will be “An Overview of Diagnosing and Treating Chronic Lyme Disease and Some Practical Suggestions for Improving Your Health in the Face of Chronic Lyme Disease.”

Keelyn Wu, D.O. began his study of Osteopathic Medicine in 1991 at the University of New England College of Osteopathic Medicine in Biddeford, Maine. Dr. Wu completed his internship at Eastmoreland Hospital in Portland Oregon in 1996 and went on to complete his residency in Osteopathic Manipulative Medicine at St. Barnabas Hospital in New York in 1998. He has been practicing Osteopathy in the Portland area since 1998. He is board certified in Neuromuscular Medicine and Osteopathic Manipulative Medicine and has consulting privileges at Mercy Hospital. In addition to his full time practice he is involved in teaching osteopathic skills, principles and philosophy to both medical students and physicians. Dr. Wu also has a special interest in nutrition and functional medicine - especially gastrointestinal issues - as it applies to both children and adults. He has completed ILADS (International Lyme and Associated Diseases Society) physician training program and treats both children and adults with tick born diseases and other chronic infections. He is also one of several local osteopathic physicians who volunteer at the Portland Osteopathic Children’s Clinic.

The Midcoast Lyme Disease Support & Education group was created and exists to raise awareness, foster education, advocate for change and provide support for those affected by Lyme Disease and other tick-borne associated diseases.

If you or someone you know has been suffering from the affects of Lyme Disease or you think you may have Lyme Disease but have never been diagnosed or treated ~ then you don't want to miss this meeting.

For more information, please contact Paula Jackson Jones at (207) 446-6447 or visit our website at www.midcoastlymediseasesupport.blogspot.com