Letter Writing Campaign Info

“Lyme disease does NOT exist in North Carolina.”

Have you been told this before? How can we change this perception among the NC medical community? Unfortunately, most doctors are completely unaware of this public health crisis. Those that are rely on insensitive lab testing that only reinforces their perception that Lyme does not exist in our state (despite three counties already declared endemic for Lyme – make that six).

One voice cannot change this. 1,000 voices can! 

We ask for your participation in the Lyme Letter Campaign to NC Health Care Providers.  You are an NC resident who suffers from Lyme or Lyme-like Illness (or are the friend, family member or caregiver of someone with Lyme). You were initially denied diagnosis and treatment only to subsequently seek the care of a doctor elsewhere.

How to participate:

  1. Utilize the bullet points listed below to assist you in your letter writing
  2. Address your letters to NC Health Care Providers
  3. Sign your letter using your initials and location (e.g., P.S., Raleigh, NC)
  4. Email completed letter to “lymeletters@gmail.com

Your emailed letters will be compiled by an NC Lyme Disease Advocate and delivered to NC Health Care Providers in bulk on the same day. Your original emails will be held in strict confidentiality.  Please use only your initials and location on your letter, not your full name. The letters will be printed and shared, excluding all email addresses and personal information. By emailing your letter, you are agreeing to these terms with the knowledge that your letter may be indirectly used or shared for further awareness campaigns including efforts to change legislation.

  • Use a Uniform introduction (first sentence is important):

My name is _______ (use first name only or initials) and I contracted Lyme disease in NC followed by ______ years of no diagnosis/misdiagnosis based on _________.

  • Do you remember being bitten by a tick and if so in which county/state?
  • What were your initial signs & symptoms?
  • How were you treated, if at all?
  • What were the consequences? (Personal, occupational, financial?)
  • Have you improved with treatment?  Did you go out of state?  Please DO NOT mention doctors’ names.
  • What are your recommendations? We suggest using one of the two following themes to close your letter:

1.  The Basic Closure :  Doctors, we ask that you objectively educate patients on the   endemic counties for Lyme Disease 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.

2.  The Advanced Closure:  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  endemic counties for Lyme Disease 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.

As with any letter campaigns, there are some things not to include in your letter.   Many of these items will turn off the readers.  Here are four important things not to do:

  • Avoid the phrase “Chronic Lyme disease.”  Although this is acceptable wording in our community, it is an immediate turn off to Health Care Providers.
  • Don’t use any doctor names, especially those that gave you inadequate treatment or your Lyme Literate Medical Doctor.
  • Avoid the “blame game.”  Do not blame the target of the letter for the problems.  It will turn off the reader and it will ensure that your letter will not be read.
  • Don’t blame the Lyme issue on some vague government conspiracy.  It will also turn off the reader.

Please see the JLA Sample letter or the AMW Sample Letter if you need some guidance on your letterWe understand that you may have questions for us so please connect with us via the “Contact Us” tab at the top of the NC Lyme Advocacy website.  

THANK YOU for your participation in this urgent campaign. Please help recruit at least 3 other participants so that we can reach our goal of 1,000 letters.

NC Lyme Advocacy Leaders

If you need a format with fewer paragraphs to assist you in writing your letters, please check out the blog post called “Tell Your Story.  

2 Responses to Letter Writing Campaign Info

  1. Pingback: NC Lyme Letter Writing Campaign | nclymeadvocacy

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