tries to operate outside those boundaries claims are denied. Claims are repeatedly denied to the point where the patient pays out of pocket until they can’t. Then treatment stops or they self-medicate in whatever manner they can afford, both of which is unacceptable because it leads to dire consequences.

PITFALL #4: There Is No Test That Proves That You Are Better

This statement is not going to be well

received however it needs to be said. Any provider that runs a follow up ELISA or WB immediately following an antibiotic regime does not fully understand tick- borne disease. The ELISA and WB are antibody tests. Antibiotics suppress your immune system and therefore, antibodies can not be made. So, an antibody blood test immediately following a round of antibiotics will almost always produce a negative result even in the presence of an active tick-borne infection.

Early infection, as early as 48-hours

post tick bite, require a PCR test (like a DNA test) that will detect the most minis- cule cell of infection. Medical Diagnostic Labs (MDL) offers both the PCR test as well as the antibody test that I highly recommend at the 6-8-week mark (with- out antibiotic use). Most Lyme literate providers offer these tests. MDL accepts

all insurances including Mainecare and Medicare. As a patient, you have the right to determine where your bloodwork goes, so when suspecting a tick-borne disease you want it to go to a lab that has over 20-years-experience dealing with tick- borne infection. I still stand with Igenex as the gold star standard for testing but where finances are concerned, MDL is the second best and by accepting all insurances, the most reliable and afford- able test.

PITFALL #5: You Won’t Get It Until You Get It

The meaning behind that is, you

won’t fully understand how devastating a tick-borne disease can be until you experience it first hand as a patient or caregiver. The many misdiagnoses, the treatments that fail to get you better, the denial letters from your insurance com- pany refusing to pay for treatment that is needed, the arguing with your spouse on how you’re going to afford treatment, and the loss of support from friends and family.

These are the realities that patients

with tick-borne diseases face every day. They wake not knowing if they can make it to work, stay at work, will continue to have a job, if their medical provider will refill a prescription and if their insurance

will cover it. They wake to find relation- ships torn, friendships strained, their children ostracized at school and notices of collections in the mail. I know this because I hear it, every day, from patients who do not know how they will go on. But most importantly, they do not want to become a burden to their families. I know first handedly because I was there. I was on the floor. I was giving up. I had no fight left in me.

This is why it has been so important

to me to have this platform. To reach those I can not see with nuggets of hope, with stories of inspiration, with messages to hang on, to reach out to me. I can and will help you get connected to life saving resources because they do exist and be- cause I speak from personal experience, that with the right supports in place, you can overcome this and that life can and will get better.

Paula is the President of the MLDSE, the 2018 Co-Chair of the Access to Care Services and Patient Support subcom- mittee 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 or visit www. See ad on page 2.

Essential Resources Acupuncture

Peck's Family Acupuncture and Wellness Studio Jessica Peck, L.Ac. 813 Main St, Waterboro, ME 207.247.7388 • See article on page 9 and ad on page 16.

Alternative & Integrative Health

Body & Soul Health Solutions Massage, Reiki & Craniosacral Therapy 74 Lunt Road, Suite 206, Falmouth 207.781.5100 •

Embodiment Therapeutic Massage & Energy Healing Tierney McCarver, LMT Structural Relief Therapy, Positional Release Therapy, Medical Massage, Pranic Healing, PSYCH-K® Facilitator Office inside Visibility 1041 Washington Ave, Portland, Maine 04103 928.848.7471 • See article on page 15 ad on page 12.

Inner Image Health Screening Clinical Thermography & NES Health Services Ingrid Levasseur 5 Fundy Road, Suite 10C, Falmouth 207.781.6060 • See ad on page 14.

Karen St. Clair Certified EFT Practitioner & Usui Reiki II Holy Fire Master Teacher, Portland • 207.878.8315 • See article on page 7 and ad on page 10.

Sarah Buck, ND

Naturopathic Medicine 224 E. Main St., Yarmouth 207.200.6597 • See ad on page 17.

Health & Home Products/Services

Northeast Laboratory Services Air, Water & Environmental Testing 120 Main St., Westbrook

866.591.7120 • See ad on page 12. 19 19

Lyme Disease

Midcoast Lyme Disease Support & Education (MLDSE) Paula Jackson Jones, President & Co-Founder 4 Mills Rd (#120), Newcastle

207.446.6447 • See article on page 18 and ad on page 2.


The Holistic Health Approach, Stephanie Walsh Nutrition, Fitness & Eating Psychology Coach 260 Western Ave., South Portland 207.730.2208 • See articles on page 13 and ad on page 10.

Nicolaus Bloom, Certified Integrative Health Coach Nutrition and Lifestyle Coach PO Box 211, Portland

207.749.5952 •

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