March for Lyme!
I t was the summer of 2007 when my beloved dog Yum Yum mysteriously vanished or died. I let her out that night. I never saw her again. Bereft, I laid in the grass crying and wishing she would return. About three months later I was up at my mother's in New Jersey and suddenly I fell very ill. I had night sweats, was gaining weight, losing weight — week to week a different weight. I had no appetite, all my hair was falling out. No energy at all. I went to about 15 different doctors. I had an ongoing strep throat and insomnia, yet all I wanted to do was sleep.
I became extremely isolated and depressed. A phone conversation was too much of an energy exertion to be had. I stopped playing guitar. I stopped going out to see friends. All I did was sleep and go to doctors.
Finally, I was told to see a psychiatrist and that "it was all in my head." Even close friends and some family thought I was doing this all for attention. My Virginia M.D. came to the rescue a month later — finally diagnosing acute Lyme disease. I had 34 bands (or co-infections) present; I was very sick. The acute Lyme turned into chronic Lyme disease, meaning you will have this for the rest of your life.
The test is called the Western Blot, done in conjunction with the ELISA (enzyme-linked immunosorbent assay) — a two-tier testing system made to be more accurate than what the government’s Center for Disease Control (CDC) had been recommending over the last decade.
Recently, after being in remission for two years, my LLMD (Lyme Literate Medical Doctor) told me I have a new tick sickness. Yes, a new tick bite, a new strain of Lyme — and I’m sick again!
So, I became pretty fed up. So fed up that I had a idea to start a march — a huge march in D.C. with at least a million people, one day next May. The media ignores Lyme for the most part, unless a celebrity gets it. And I praise everyone, celebrity or not, who “comes out” and shares the vitriol of the disease and wreckage it causes, including its effects on the brain.
But we need more. We need a march. We need worldwide media attention. Suicide is a frequent outcome of people with chronic Lyme. Most people have no idea of this tragic fact. Lyme not only makes you sick but it will bankrupt you as well. It will isolate you, because you are too sick to socialize, much less leave your house. And, in advanced, chronic Lyme, you can be paralyzed and bedridden. These are all facts, not opinions.
Last late fall and through February I was filming "Macbeth." I was in remission and it was great! I was given a reminder of what it was like to feel normal again, not be sapped of energy and focus; basically living life!
Since the CDC and IDSA (Infectious Diseases Society of America) have not updated their guidelines. medical insurance often does not cover the costs of LLMDs. Any Lyme-literate doctor knows the current standard of care — one bottle of the broad-spectrum antibiotic doxycycline — will not cure you. It's like putting in stitches just to take them out two weeks too early and then the wound opens, bleeding again.
As a member of the “Lyme community,” attending small protests and suffering for so long off and on, not being able to work, function and do the normal things you do, I have been inspired to created this march.
One million or more marchers in Washington, D.C., will call attention to the fact that Lyme disease is the fastestgrowing infectious disease in the world, and that something needs to be done.
"May We March For Lyme" is a peaceful way to raise awareness in a groundbreaking way. It is not a nonprofit, it is not an organization, it is a simple march. It's on Facebook; I started a Facebook page just a few weeks ago, and it's already gained almost 1,000 organic “likes.”
People want change and they want a cure. We are underfunded, and ignored. This must change. It will change. Lyme disease is not “in our heads." It is as real as you can get. We need all the support we can for this march. All. United We Stand. Divided We Fall. Let’s march!