The diagnosis for me did not come that easy. It took numerous doctor visits, tests, a four-day hospital stay, several emergency room trips and 14 different doctors until I finally received the correct diagnosis after six years of searching and questioning.
Some of you might remember me from a Brentwood Press article dated March of 2008, entitled “War on Parkinson’s takes teamwork” In 2007 I was diagnosed by a neurologist at UCSF as having contracted Parkinson’s disease. I told the doctor my story of how I had been bitten by a tick. The response I received was typically what most Lyme sufferers unfortunately are told: “you don’t have Lyme disease; we don’t have Lyme disease in California.”
The Parkinson’s diagnosis was not the only diagnosis I was given. During our six-year journey my husband and family would support me through countless different diagnoses – some labeled with a very short lifespan. Through faith, perseverance and countless hours of searching on the Internet we were able to find a Lyme-literate doctor to properly test and begin treating me.
Lyme disease is the fastest-growing vector-borne disease in the world. Less than 25 to 60 percent of people bitten develop the classic bulls-eye rash. The disease is spread by the Ixodes Pacifica tick. This tick has been found in 56 of the 58 counties in California. California nymphal tick activities are highest in April, May and June; however, California’s mild climate puts Californians at risk all year.
Ticks spread other diseases along with Lyme disease: babesiosis, a malaria-like disease; Bartonella henselae, commonly known as “cat scratch fever”; Ehrlichliosis, also called anaplasmosis; Rocky Mountain spotted fever; myoplasma; and Morgellons. If you have one or more of these co-infections, diagnosis and treatment become more difficult.
I feel it’s important to point out that tick-borne diseases are called the Great Imitator because the symptoms often are misdiagnosed as MS, ALS, chronic fatigue syndrome, fibromyalgia, Parkinson’s disease, ADHS, and mental illness and others. Chronic Lyme can take years to respond to treatment and cost the patient and their families tens of thousands of dollars. Tick-borne diseases affect patients’ ability to provide for themselves and their families as well as put a huge strain on the family.
Each day is a battle in itself. Daily my body is riddled with pain. My joints often feel tight and swollen. The fatigue is astronomical to where I feel I haven’t even slept a wink during the night. My hands are often stiff and I often tell folks our staircase in our home has become my own private Mt. Diablo.
On May 15 and 16 at 2 p.m., the Rave Motion Picture Theater here in Brentwood will be showing two matinee showings of the documentary film “Under Our Skin.” A gripping tale of microbes, medicine and money, “Under Our Skin” exposes the hidden story of Lyme disease, one of the most controversial and fastest-growing epidemics of our time.
Each year, thousands go undiagnosed or misdiagnosed, told that their symptoms are “all in their head.” Following the stories of patients and physicians fighting for their lives and livelihoods, the film brings into focus a haunting picture of the health care system and a medical establishment all too willing to put profits ahead of patients.
May is recognized as Lyme Disease Awareness Month in Brentwood. I hope that people will go see this film so that they can better understand the hidden issues of this terrible debilitating disease. There is Lyme Disease in Brentwood and throughout California. My personal motto is: I might be depleted; however, I am not defeated!
The East Contra Costa County Lyme Disease Support Group meets the second Saturday of the month from 10:30 a.m to noon at Eskaton Lodge in Brentwood. For more information, e-mail me at btrflynana@yahoo.com For more information regarding Lyme Disease, visit the California Lyme Disease Association (CALDA) Web site, www.lymedisease.org.
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