By: Jennifer Imler
“I am now part of a club of people with a stigmatized disease that many doctors refuse to touch.” Rebecca Wells, author of the Divine Secrets of the Ya-Ya Sisterhood and Lyme disease patient
Lyme disease is the fastest growing infectious disease in the United States. As evidenced by Sharon’s story below and so many other stories like hers, education and raising awareness about the disease, symptoms, diagnosis, treatment, and prevention is more important than ever. Ensuring that doctors are Lyme-literate is especially important so the disease may be caught in the early stages, before the ignorance and stigmatization of Lyme disease has the chance to destroy the patient’s marriage, career, family, health, and even their life. Most doctors are uneducated about and uncomfortable with diagnosing and treating Lyme disease and can actually risk facing disciplinary action for treating Lyme disease patients with an efficient protocol, which requires antibiotics for longer than four weeks.
Amy Tan, Rebecca Wells, and Jimmy Wales are all well-known Lyme disease patients, but our friend, Sharon Rainey, has also been diagnosed with Lyme disease. By sharing a synopsis of her struggle with Lyme below, we sincerely hope that you learn from it, understand how important awareness is, and hopefully choose to help the quest to raise awareness for Lyme disease.
SHARON’S STORY:
Sharon Rainey, founder of myNeighborsNetwork, is a successful and intelligent businesswoman with a supportive and loving family. After an incredibly long journey to have the extensive list of symptoms correctly identified, Sharon was diagnosed with Bartonella, a co-infection of Lyme disease and Babesia, tick-borne illnesses by a Lyme Literate Medical Doctor (LLMD) in September of 2009.
EXCRUCIATINGLY PAINFUL AND BIZARRE SYMPTOMS
In June of 1981, Sharon was a bright and happy high school senior when viral meningitis attacked. By October, she was sleeping 23 hours a day and had to drop out of college for a semester. The doctors had no definitive diagnosis, but no one suspected a tick-borne disease.
For the following ten years, the disease remained relatively quiet, only surfacing through bizarre but seemingly unconnected symptoms: sun sensitivity, dental problems, recurrent sinus infections, and migraines. After the birth of her son, more painful and debilitating symptoms developed including joint pain, gallbladder problems, H.Pylori infection, hypothyroidism, elevated heart rate, daytime sleepiness, numbness in her hands and feet, occasional blurred vision, and vitamin deficiencies. They would come and go, enough to be significantly irritating, but not urgent. In Spring 2009, a clumsy fall caused tasks as simple as getting out of bed in the morning, something that most of us take for granted, to become excruciatingly painful.
WHAT THE DOCTORS MISSED
Between 2003 and 2009, multiple Lyme tests (ELISA) were negative. However, the general ELISA test can be up to 70% inaccurate. If the physicians had requested the Western Blot to be run regardless of the ELISA result, Sharon could have received the correct diagnosis earlier and avoided much of the debilitating pain. The numerous specialist visits and misdiagnoses culminated in 2009, including being told she required immediate back surgery, a misdiagnosis of Lupus, and a subsequent misdiagnosis of Bursitis, all within four months.
A GUIDING LIGHT
Sharon’s uncle, whose wife died at age 57 due to Lyme disease that was not diagnosed in time, became Sharon’s “guiding light.” Refusing to let Sharon give up or accept a misdiagnosis, her uncle not-so-gently prodded her to keep trying, while providing extensive documentation to prove to Sharon that she had Lyme disease. Finally, in September of 2009, Sharon found a Lyme Literate Medical Doctor (LLMD) who diagnosed her with Bartonella, a co-infection of Lyme disease and Babesia, after further testing.
SHE MAY NEVER BE CURED
Diagnosis is only the first step. Sharon’s treatment will take more than a year. Since treatment began only four months ago, many symptoms have lessened; she is feeling much better already. Although there are some setbacks; some of the medications can initially increase the severity of the symptoms, but Sharon knows she will conquer this disease.
Sharon’s current list of medications includes several supplements such as Vitamins B and D, natural blood thinners, probiotics, digestive aids, baby aspirin, and antibiotics.
SHARON’S ADVICE
Lyme disease is incredibly hard to diagnose without the aid of a Lyme Literate Medical Doctor (LLMD). Sharon was tested for Lyme disease more than once, dating as far back as 2003, but only the ELISA test was performed. The ELISA test is about 20%-30% accurate, depending upon the laboratory used. It is imperative that your doctor write on the lab scrip for the lab to run the Western Blot IgL and IgM EVEN IF THE ELISA IS NEGATIVE and make sure you receive a copy of the results. If ANY of the DNA bands are POS (Positive) or IND (Indefinite), you need to see a Lyme Literate Medical Doctor (LLMD). Many patients have been misdiagnosed even though some bands were positive, because the “right” bands were not positive. As an example, Sharon’s first test showed one positive band, the second test showed three positive bands, and the third test showed five positive bands, but each time doctor insisted that she did not have Lyme disease. With present state of the art testing procedures, the actual DNA sequences of where the Lyme resides can be isolated.
If you are suffering with bizarre, changing symptoms, do not give up. Trust your instincts, advocate for yourself, get multiple opinions, keep a copy of every test and medical record, and ask for help and support from loved ones. Most importantly, make sure that you are properly tested and see an LLMD, even if you have to wait months to get an appointment.
CONTACT SHARON
If you would like to talk to Sharon to get more information, share your Lyme story, or for any other related reason, she is more than happy to share a cup of coffee, emails, letters, or a phone call. Please do not hesitate to contact her via phone at 702-929-2399 or via email at Sharon@myneighborsnetwork.com.
AWARENESS
We sincerely hope that by sharing a synopsis of Sharon’s story you can see just how important it is to be aware of every aspect of Lyme disease. Only when ignorance of Lyme disease no longer pervades the citizenry, the insurance and pharmaceutical industries, and the medical associations can we truly begin to properly diagnose, treat, and prevent Lyme disease efficiently. If you have any questions, comments, or concerns regarding Lyme disease, please do not hesitate to contact us here at Mosquito Squad or to contact Sharon. If you think you may have Lyme disease, we implore you to get tested properly by a Lyme Literate Medical Doctor. You are not alone.
LINKS
For more information on Lyme disease, please visit the National Capital Lyme and Tick-Borne Disease Association.
For more information on Lyme Literate Medical Doctors, visit the International Lyme and Associated Diseases Society.
To read about Sharon’s ongoing battle with Lyme disease, read her poignant and moving blog, Living with Lyme.
See our earlier blog post about Protecting Yourself From Tick Bites.
Check out Damien’s post on the Rising Occurrence of Lyme disease.
