Don’t Look The Other Way. The Lyme Disease Discussion

shs74I am so fortunate to come from a place like Scarborough, Maine which touts the phrase “The Way Life Should Be.” After spending the past two years in the very fast paced, hectic and noisy part Southern California it was a good reprieve to be in the quite with just the crashing thunder of the waves as the background noise.

For one month I was surrounded by family, friends and classmates as I attended my 40th high school reunion. The time flew by and now I have a whole new set of memories to take with me on my journey.

We shared stories of births and deaths, joys and sorrows. It was about life, “just as it should be.” People who knew wanted to talk about the mysteries of Lyme disease, yet others turned away not wanting to know whether out of fear, ignorance or denial; the one thing I do know is the discussion needs to become main stream. People need to talk about it; all sides of it, a lot of people are suffering in silence and don’t know where to turn.

Doctors tell us it’s all in our head, we are told to change our attitude and we’ll get better, we are put through a battery of tests, x-rays, MRI’s to the tune of thousands of dollars only to be sent home. People tell me how good I look. It’s true! Sometimes I look at myself in the mirror and think I have never looked better. My skin is soft and subtle, my hair turned grey is shiny, my physique is slim; how could I possibly be sick. Yet, my body is attacking itself on the inside.

I am fortunate to be open to alternative methods of healing. Late stage, chronic Lyme is not helped by the “Lyme Cocktail” of drugs which is prescribed to those who see the red rash when first bitten. You have a three week window of opportunity before these pesky creatures call your body “home.”

During my stay in Maine I heard stories and shared my experiences. In a place where Lyme is prevalent still the doctors do not test for Lyme disease until all other testing fails. Generally by this time it’s too late or the tests come back negative and you are turned away.

The stories were of depression, comprehension problems, being paralyzed, hospitalization and thoughts of suicide. Yes, that is what we “Lymies” live with, yet we look good! We begin to decline offers to attend social gatherings, the energy it takes is just too much and the thoughts of having to carry on a conversation are too strenuous. We begin to hide out because after all it is in our heads.

My heart bled for the people that are leading the lives of the stories that I heard. Even though I am not out of the woods myself and have to figure out what a life with Lyme really looks like now and in the future, my belief and use of natural medicine has helped me to be one of the lucky ones, at least for this moment in time. My life has changed dramatically and that is just something that I and other Lymies have to accept and most importantly embrace.

I live gluten, yeast, sugar and alcohol free to allow my body to work on processing the toxins that these bugs produce rather than working on processing bad food stuff. I do not eat anything that is genetically modified and neither should you.

My skin care has changed as well. I now only use organic products on my skin knowing that it is my largest organ and can use the help. I have stopped dying my hair so that my body has fewer and fewer chemicals to breakdown.

Lyme disease moves around the body to its weakest points. It pounces upon the immune system, chipping at it moment by moment going undetected. The spirochete as it is called looks like a curly piece of hair which is able to drill itself into organs and body parts as it is threatened by forms of treatment. This is one of the reasons it is so hard to detect as it is able to mimic other diseases such as MS, Parkinson’s, Lou Gehrig’s, Lupus and other auto immune disorders.

The medical profession is like a deer in head lights wanting to give us a magic pill, yet none exist. Doctors that openly treat Lyme patients are threatened and in some instances their licenses are revoked if they attempt to use alternative natural treatments. To get around this barrage of oversight, doctors like mine, do not label me as a Lyme patient yet only speak and note in my patient chart all of the co-infections or other problems that I have as a result of this disease.

I take sixty supplements a day, have a monthly lymphatic drainage massage, and see a chiropractor, naturopath and an acupuncturist. I have traveled to Poland for BioResonance treatment, all so that I can attempt to lead a “normal life.” No, these treatments are covered by insurance. My health treatment is a line item in my budget that comes before putting a roof over my head; it’s just a way of life.

So when someone around you tells you they have Lyme, don’t tell them “well you look good, or “well at least you don’t have cancer,” give them a hug, ask them if they need to rest or offer a quiet place. Don’t judge them when they refuse an invitation. Understand on the other hand that it is just as difficult for us to explain as it is for you to understand all the complexities this disease has to offer.

Just keep the conversation going….Lyme disease is real.

Originally posted August 26, 2014 (

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