Meeting the Needs of Midcoast Maine's Lyme Community

http://lincolncountynewsonline.com/main.asp?SectionID=19&SubSectionID=19&ArticleID=67440&TM=38967.7

Commentary: Meeting the Needs of Midcoast Maine's Lyme Community

By Paula Jackson Jones As president and co-founder of the Midcoast Lyme Disease Support & Education organization, I am writing to clarify and put to rest some rumors we are hearing about our organization. First and foremost, we are not a group of disgruntled activists seeking revenge on those whom we feel have harmed us or done us wrong. From day one our mission statement has been to raise awareness, foster education, advocate for change, and provide location community support across the Midcoast region of Maine. We do this because Lyme and tickborne diseases continue to rise and the Midcoast region is hit the hardest. We do this because we ourselves had to fight so hard to find our way on our own journey back to wellness and we are trying to make it as easy and painless as possible for those who come behind us. We do this because along the way, we were educated and we continue to be educated about this very difficult and complex disease. The state of Maine has done much in the area of awareness surrounding Lyme and tickborne diseases. In 2007, LD1521 went into effect to Provide Public Education Concerning Lyme Disease. This provided a platform for public education events, resources for educators, Lyme Fact Sheets, Lyme Disease Q&A and established the Maine Tracking Network. In 2010, LD1709: An Act To Enhance Public Awareness of Lyme Disease was passed into law. The outcome was the governor proclaiming the month of May as Lyme Disease Awareness month. In 2013, LD597: An Act To Inform Persons of the Options for the Treatment of Lyme Disease was passed into law. This was a very important turn as far as public awareness and education went. This law acknowledges the difficulty in diagnosing and treating Lyme disease, it provides information on the risks of long-term antibiotic therapy and it provided websites for more information about Lyme and treatment of Lyme. From LD597, people were supposed to be given a copy of their Lyme blood tests regardless of the results. To date, this is not happening on a regular basis. By their own admission, in 2013 the federal Centers for Disease Control acknowledged their surveillance of Lyme was grossly under reported, adjusting their count from 30,000 to 300,000. That's 270,000 people whose lives were affected by this disease, but whose numbers didn't count. When a Maine medical provider reports a positive case of Lyme disease by the CDC criteria, the Maine CDC sends them back a letter, which is then to be filled out with detailed information for accurate surveillance data measuring purposes. To date, over 1200 confirmed cases exists with over 1100 additional outstanding letters from doctors that have not been returned. In speaking with a few doctors, I was told that they had not realized there was additional action to take place and yet, surveillance measures have been in place, unchanged, since 2001.  The most recent Lyme law, passed in 2015 is LD422: An Act To Improve Access To Treatments for Lyme Disease. Now at this point you may be scratching your head and asking yourself, "Why do we need a law to improve access to treatment?" Sadly, the answer is because of the great controversy over diagnosing and treating Lyme and tickborne diseases, medical providers were being brought before the Medical Licensing Board and disciplined for trying to help their patients get better. Some closed their doors or relocated to states where existing laws were already in place. The guidelines that many personal care providers follow outline a standard protocol to follow. However, at the bottom of the 2006 IDSA guidelines, it reads as follows:  "FOOTNOTE: These guidelines were developed and issued on behalf of the Infectious Diseases Society of America. It is important to realize that guidelines cannot always account for individual variation among patients. They are not intended to supplant physician judgment with respect to particular patients or special clinical situations. The Infectious Diseases Society of America considers adherence to these guidelines to be voluntary, with the ultimate determination regarding their application to be made by the physician in the light of each patient's individual circumstances." This is what gives each medical provider flexibility to treat in accordance to what is in the best interest of the patient, but because many have missed that footnote, in the end, it was the patient who suffered because of it. So what does all this mean? It means that if your primary care physician is not up to speed on the latest Lyme and tickborne disease research, diagnostic tools and treatment modalities, that you have options other than remaining sick. This is where knowing your rights and advocating for yourself or a loved one comes into play. There are many, many treatment options available and not all require long-term antibiotic. There are many natural options that are more potent and effective than any pharmaceutical. There are medical providers who have taken it upon themselves to be further educated with Lyme and tickborne diseases and because of this, they are considered "Lyme literate" with a vast resource of diagnostic tools and treatment modalities at their fingertips to help their patients get better. These are medically educated and fully Maine-state licensed doctors. No longer do you have to leave the state to find a Lyme literate doctor to treat you. There are many different treatment options to choose from and for someone who has been sick for a long time, sometimes it takes trying a few different options until you find the one that works best for you. We are not medical doctors. We do not diagnose people. We do not push any one treatment modality over another. We do not promote the use of long-term antibiotics over natural supplements or vice versa. We promote getting sick people well again by connecting them to providers who can and who are committed to helping them get better. We do not get paid and our time is all volunteered. More importantly, we do not slander any physician who refuses to diagnose or treat the people who eventually find their way to us. We realize that, even with these Maine laws in place, there is still a larger need for physician education and we have taken it upon ourselves to foster that here in the Midcoast region, through our events, speaking engagements, and our free community conferences. Continuing education credits are offered to those who attend, which means state accredited associations have approved the content and caliber of information being offered. We are a part of the vector-borne work group through the Maine CDC and our organization is listed on their website as an eternal resource. People with cancer get handed off to a cancer-specialist and are treated with drugs that are very dangerous but effective in killing off cancer cells. People with broken bones are referred to orthopedic specialists for diagnosis and treatment. People with Lyme or tickborne diseases remain misdiagnosed and mistreated in mind-blowing proportions. This letter is long overdue. We've been actively helping the people of Midcoast Maine since April 2014 and still we are called "activists" and many think we refer people to "quacks" and "witch doctors" and that they are being treated with "snake oil." Too many people are suffering due to misdiagnosis and mistreatment. Too many people are still sick and still suffering. We are here to set the record straight and do everything within our power to further the awareness and education to reduce the growing epidemic of Lyme and tickborne disease here in Midcoast Maine. We are in no way attacking our Maine doctors. We are spotlighting that additional education is needed and that it does exist and we are encouraging them to seek it out. Our organization's responsibility is, and always will be, to meeting the needs of Midcoast Maine's Lyme community.

https://www.lymedisease.org/idsa-guidelines-removed-ngc/

12

FEB

2016

IDSA Lyme guidelines removed from NGC; ILADS guidelines still there

The National Guidelines Clearinghouse-a federal database that provides treatment information to health care professionals and insurance companies-has removed the IDSA Lyme disease treatment guidelines from its website recently.
This means that the only Lyme disease guidelines listed on the NGC are those of ILADS, which were posted in 2014. This is quite good for the Lyme community. Here’s the backstory.
In 2006, shortly after the IDSA published its most recent guidelines on the treatment of Lyme disease, an antitrust investigation was filed by then-Connecticut Attorney General Richard Blumenthal. (Blumenthal is now a U.S. senator.)
The IDSA settled the antitrust investigation by agreeing to review its guidelines in a public hearing—which provided essentially equal time for the IDSA and patients, clinicians, and scientists who held opposing views.
The hearing panel released its finding in 2010. The panel for the hearing was exclusively IDSA members so it is no surprise that they endorsed their own society’s guidelines—although panelists did recommend 25 changes. Nevertheless, the IDSA advised the NGC that the IDSA had reviewed its guidelines and that no change was necessary.
Based on the IDSA’s assertion, the NGC allowed the IDSA guidelines to be posted for an additional five years essentially without having to actually review and revise the guidelines. LymeDisease.org protested this extension with the NGC.
However, in 2014, the NGC revised its criteria for listing guidelines to conform to some of the standards adopted by the Institute of Medicine in 2011 for creating trustworthy guidelines. These standards included using a rigorous evidence review system. The ILADS guidelines, which were authored by Lorraine Johnson (LymeDisease.org), Dr. Dan Cameron (ILADS), and Dr. Betty Maloney, conformed to the high evidentiary standards of the IOM. Although the IDSA guidelines did not conform, because they were filed before the NGC adopted the IOM standards, they were given a “free pass” on compliance.
LymeDisease.org thought it was highly likely that the IDSA would file another “no change” extension of its guidelines and that the NGC would continue its “free pass” for non-compliance with the IOM standards. However, the NGC recently delisted the IDSA guidelines. This is because the guidelines had passed their five-year mark and did not comply with the more stringent requirements.
The IDSA guidelines are currently undergoing revision. The IDSA’s guideline revision process was publicly posted for comment in May 2015. LymeDisease.org and the Lyme Disease Association led an effort to gather comments from close to 90 groups protesting the process—which among other things—did not include a Lyme patient as required by the Institute of Medicine.
LymeDisease.org launched a patient survey called for comments on the IDSA guidelines on March 27 and filed comments from over 6,100 patients in less than a month.  After the protest regarding the failure to include a Lyme patient on the panel, in response to pressure by U.S. congressmen, the IDSA suggested that it might reconsider putting a Lyme patient on the panel. We do not know the revision schedule for the IDSA guidelines.
But for now those guidelines have been removed from the NGC as outdated and not in compliance with current standards. This leaves the ILADS guidelines for the treatment of Lyme disease as the only guidelines currently posted on the NGC.
The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org. You can contact her at lbjohnson@lymedisease.org. On Twitter, follow her @lymepolicywonk.

Damariscotta Support Group Meeting Reminder

 Our Damariscotta Lyme Disease Support Group is our only Day Time meeting. Its a great opportunity for those who cannot meet in the evenings and need support. This group meets every 3rd Monday of each month. So don't forget to put it into your calendar! Monday, February 15th is its next meeting date.

Building Bridges to Fight Lyme Disease Together

As President and Co-Founder of the Midcoast Lyme Disease Support & Education organization, I am writing to clarify and put to rest some rumors we are hearing about our organization.

First and foremost, we are not a group of disgruntled activists seeking revenge on those whom we feel have harmed us or done us wrong.  Our mission statement, from day one and continues to be, to raise awareness, foster education, advocate for change and provide local community support across the Midcoast region of Maine.

We do this because Lyme and tickborne diseases continue to rise and the Midcoast region is hit the hardest. We do this because we, ourselves, had to fight so hard to find our way on our own journey back to wellness and we are trying to make it as easy and painless as possible for those who come behind us.  We do this because along the way, we ourselves were educated and we continue to be educated about this very difficult and complex disease.

The state of Maine has done much in the area of awareness surrounding Lyme and tickborne diseases.  In 2007, LD1521 Resolve went into effect to Provide Public Education Concerning Lyme Disease. This provided a platform for public education events, resources for educators, Lyme Fact Sheets, Lyme Disease Q&A and established the Maine Tracking Network.  In 2010, LD1709: An Act To Enhance Public Awareness of Lyme Disease was passed into law. The outcome was the Governor proclaiming the month of May as Lyme Disease Awareness month.  In 2013, LD597:  An Act To Inform Persons of the Options for the Treatment of Lyme Disease was passed into law. This was a very important turn as far as public awareness and education went.  This law acknowledges the difficulty in diagnosing and treating Lyme Disease, it provides information on the risks of long-term antibiotic therapy and it provided websites for more information about Lyme and treatment of Lyme.  From LD597, people were suppose to be given a copy of their Lyme blood tests irregardless of the results.  To date, this is not happening on a regular basis.

By their own admission, the federal CDC in 2013 acknowledged that their surveillance of Lyme was grossly under reported, adjusting their count from 30,000 to 300,000.  That's 270,000 whose lives were affected by this disease but whose numbers didn't count.  

When a Maine medical provider reports a positive case of Lyme Disease by the CDC criteria, the Maine CDC sends them back a letter, which is then to be filled out with detail information for accurate surveillance data measuring purposes.  To date, over 1200 confirmed cases exists with over 1100 additional outstanding letters from doctors that have not been returned.  In speaking with a few doctors, I was told that they had not realized there was additional action to take place and yet, surveillance measures have been in place, unchanged, since 2001.  

The most recent Lyme law, passed in 2015 and in effect is LD422:  An Act To Improve Access To Treatments for Lyme Disease.  Now at this point you may be scratching your head and asking yourself, "Why do we need a law to improve access to treatment?" and sadly, the answer is because of the great controversy over diagnosing and treating Lyme and tickborne diseases, medical providers were being brought before the Medical Licensing Board and disciplined for trying to help their patients get better.  Some closed their doors or relocated to states where existing laws were already in place.   The guidelines that many PCPs follow outline a standard protocol to follow.  However, at the bottom of the 2006 IDSA guidelines, it reads as follows: 

FOOTNOTE:  

These guidelines were developed and issued on behalf of the Infectious Diseases Society of America.

It is important to realize that guidelines cannot always account for individual variation among patients. They are not intended to supplant physician judgment with respect to particular patients or special clinical situations. The Infectious Diseases Society of America considers adherence to these guidelines to be voluntary, with the ultimate determination regarding their application to be made by the physician in the light of each patient's individual circumstances.

This is what gives each medical provider to treat in accordance to what is in the best interest of the patient.  But because many have missed that FOOTNOTE, in the end, it was the patient who suffered because of it.

So what does all this mean for the people of Maine, and more importantly for the people of Midcoast Maine whom we are helping on a daily basis?

It means that if your primary care physician is not up to speed on the latest Lyme and tickborne disease research, diagnostic tools and treatment modalities, that you have options other than remaining sick.  This is where knowing your rights and advocating for yourself or a loved one comes into play.  

There are many, many treatment options available and not all require long-term antibiotic. And there are many natural options that are more potent and effective than any pharmaceutical.  One upon a time, marijuana was consider the drug of choice for potheads. Now, your doctor can help you obtain a medical marijuana card to use this plant for medicinal purposes. Boy, have we come a long way in our narrow-minded thinking!

All US Labs are required to be CLIA-approved, not FDA approved.  FDA-approval is only required for home base tests (ie pregnancy tests).

There are medical providers (MDs, DOs, NDs, FNPs and so on) who have taken it upon themselves to be further educated with Lyme and tickborne diseases and because of this, they are considered "lyme literate" with a vast resource of diagnostic tools and treatment modalities at their finger tips to help their patients get better.  These are medically educated and fully Maine-state licensed doctors. No longer do you have to leave the state to find a lyme literate doctor to treat you.  

There are many different treatment options to choose from and for someone who has been sick for a long time, sometimes it takes trying a few different options until you find the one that works best for you.

We, MLDSE, are not medical doctors. We do not diagnose people. We do not push any one treatment modality over another. We do not promote the use of long-term antibiotics over natural supplements or vice versa.  We promote getting sick people well again by connecting them to providers who can and who are committed to helping them get better.  We do not get paid and our time is all volunteered. But more importantly, we do not slander any physician who refuses to diagnose or treat the people who eventually find their way to us. We realize that, even with these Maine laws in place, that there is still a larger need for physician education and we have taken it upon ourselves to foster that here in the Midcoast region, through our events, through speaking engagements, through our FREE community conferences.  Continuing education credits are offered to those who attend, which means that the state accredited associations have approved the content and caliber of information being offered.  We are a part of the Vector-borne Work group through the Maine CDC and our organization is listed on their website as an eternal resource. 

With laws in effect to protect and educate, with medical providers fully educated on how to diagnose and treat a multi-systemic and complicated infectious disease, with updated guidelines and resources at hand to guide physicians who are uncertain how to proceed and with support resources in place ~ there is no excuse for the growing number of sick people who continue to be sick, tormented, accused and medically mistreated and misdiagnosed.  People with cancer get handed off to a Cancer-specialist and are treated with drugs that are very dangerous but effective in killing off cancer cells. People with broken bones are referred to orthopedic specialists for diagnosis and treatment.  People with Lyme or tickborne diseases remain misdiagnosed and mistreated in mind-blowing proportions. 

This letter is long over due.  We've been actively helping the people of Midcoast Maine since April 2014  and still we are called "activists" and many think we refer people to "quacks" and "witch doctors" and that they are being treated with "snake oil".   Too many people are suffering due to misdiagnosis and mistreatment.  Too many people are still sick and still suffering PERIOD.

We are here to set the record straight and do everything within our power to further the awareness and education to reduce the growing epidemic of Lyme and tickborne disease here in Midcoast Maine.  We are in no way attacking our Maine doctors. We are spotlighting that additional education is needed and that it does exist and we are encouraging them to seek it out.  Our organization's responsibility is, and always will be, to meeting the needs of Midcoast Maine's lyme community.

~ Paula Jackson Jones