Monday, February 15, 2016

Meeting the Needs of Midcoast Maine's Lyme Community

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.