J.L.A Sample Letter

Please see our sample letter on how to construct your letter.  Please do not copy it as it is an actual Lyme patient’s story, but it is here merely to be used as guidance to assist you. However, the bottom paragraph is in bold since it is the suggested theme we want to close out your letters.

NC Health Care Providers,

My name is J.L.A. (or you can use your first name) and I contracted Lyme Disease in Granville County NC followed by 12 years of misdiagnosis based on never linking a single tick bite to the cause of  my onset symptoms including an odd presentation of seizures.  My weakened immune system and childhood epilepsy misguided health care providers that initially treated me.

I had what I consider to be a unique presentation of Lyme Disease during the first year after the initial tick bite.  I never experienced the typical symptoms including fevers, joint pain, fatigue, flu like symptoms or even the Erythema Migrans rash. My presentation included both Grand Mal and Petite Mal seizures and twice weekly bouts of vomiting.

As stated in the beginning, doctors were misguided due to my childhood epilepsy and I was placed on anti-epileptic medicine.  However upon a week long video EEG study, I was discharged with instructions to see a psychologist.  Although I knew something was wrong, I listened to those initial doctors.  My symptoms grew exponentially worse over the following decade causing several surgeries to be performed including the removal of a breast lump and gall bladder.

Eleven years into my journey another tick bit me in Johnston County NC. I went to an urgent care clinic as I experienced the typical presentation of Lyme including the most well known and definitive sign appeared, the bulls-eye rash.  This health care provider explained to me that the ELISA test were inaccurate and that my test likely would yield negative results even though it was obvious I had Lyme Disease from the most recent tick bite. The Doxycyline appeared to help many of the symptoms that had plagued me for years.  To make a long story short, I sought help from the North Carolina Lyme Disease Foundation after almost another year of being sent to four more doctors including another Neurologist and Rheumatologist.

Ultimately in 2007, I sought the help of an Integrative Medical Physician in NC and he asked one simple question about a tick bite in 1995.  It was in that moment that we knew Lyme was the causative agent to most of my health problems.  Two years later my Western Blot test finally turned positive after my immune system was strong enough to create the antibodies to show up on the Lyme test.

Since the beginning of my journey, my husband and I have struggled financially.  Ultimately, I had to quit my full time job as a preschool educator.  As a result of my diagnosis, I have encountered countless others that have experienced a similar journey in North Carolina.  I know at this point you want to know how you can help us create solutions that will help solve this health crisis in North Carolina.

Are you aware that Lyme is a ‘reportable disease’ in North Carolina? It is important for all physicians to follow through with reports for a true epidemiological representation of what patients are experiencing in this state.  Doctors, we ask that you objectively educate patients on the presence of Lyme Disease in North Carolina and the lab testing limitations.  If you opt not to treat based on clinical symptoms, please refer patients to other resources such as www.ilads.org for other options.

Thank you so much for your time regarding this matter                                                               J.L.A  Clayton, NC

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4 Responses to J.L.A Sample Letter

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