Patient Advocacy for Lyme

We as patients should not have to defend ourselves against the verbal attacks and unprofessional behaviors we’ve expe- rienced in medical offices. We shouldn’t have to fight with our insurance companies to get the treatment that we so desperately need covered. The alternative is not to re- ceive treatment and to remain sick, lapsing into debilitative conditions.

This is our life and we have the right

to choose what kind of medical provider we want to see and how we want to be treated. Many other medical conditions allow this without hesitation. We have already lost patient lives to this disease due to lack of proper diagnosis and treatment. We have lost jobs, marriages and have been financially ruined all because we can not get the proper treatment that we so desperately deserve.

New IDSA Guidelines

Now, when the IDSA published their guidelines in 2006, there was a footnote at the bottom that read, “These guidelines were developed and issued on behalf of the Infectious Diseases Soci- ety of America. It is important to realize that guidelines cannot always account for individual variation among patients. They are not intended to supplant physi- cian 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 deter- mination regarding their application to be made by the physician in the light of each patient's individual circumstances.”

In September 2015, National Guide- line Clearinghouse (NGC), a federal data- base that provides treatment information to healthcare professional and insurance companies, added a second set of guide-

lines submitted by International Lyme and Associated Diseases Society (ILADS). These guidelines had passed the same rigor- ous grading system that the IDSA guide- lines had originally undergone; however, because the IDSA failed to update their guidelines upon numerous requests, they were removed from the database in Feb 2016. Ironically, in April 2018, the NGC announced that they were shutting down the database due to lack of funding and ef- fective July 16, 2018, closed down access to their site.

So, if adherence is VOLUNTARY with the ultimate determination to be made by the physician in light of each individual circumstance, then why in 2017, did I and other advocates here in Maine have to fight to get a bill passed into law [LD422] just to protect our Maine doctors who were doing just that ~ using their knowledge and expe- rience to individualize their patient’s treat- ment based on each set of circumstances.

Kenny Rogers may have sung, “You

have to know when to hold them, know when to fold them, know when to walk away and know when to run,” but we are not folding and we’re not gonna take it. Our cards are on the table and that is a very powerful position to have.

Paula Jackson Jones is the President of the MLDSE, the Co-Chair of the Access to Care Services and Patient Support subcommittee of the Federal HHS Tick-borne

Disease Working Group, the Maine-partner of the national Lyme Disease Association, member of Maine’s CDC Vector-borne Workgroup and active in Maine’s Lyme legislation. You can reach her at and visit her website See ad on page 3.

Contact Newton Dubs at to learn more!

Planning an Event? List it in the

ELMTM Calendar!

Move Your Life Forward!

EFT-ELM 8” x 2.5” KSC_EFT-ad-0418 April 5, 2019 9:52 AM DGD

EFT Tapping 207-878-8315 13

Page 1  |  Page 2  |  Page 3  |  Page 4  |  Page 5  |  Page 6  |  Page 7  |  Page 8  |  Page 9  |  Page 10  |  Page 11  |  Page 12  |  Page 13  |  Page 14  |  Page 15  |  Page 16  |  Page 17  |  Page 18  |  Page 19  |  Page 20  |  Page 21  |  Page 22  |  Page 23  |  Page 24  |  Page 25  |  Page 26  |  Page 27  |  Page 28  |  Page 29  |  Page 30  |  Page 31  |  Page 32  |  Page 33  |  Page 34  |  Page 35  |  Page 36