Changing the Public Health Lyme Webpage and Lyme Facts Sheets

As part of the Worldwide Lyme Protest 2014, we are going to try to educate the public. One way that we can do this is to get the Department of Health in each state to update their information on Lyme Disease.

Changing the Department of Health Lyme Webpage and Lyme Fact Sheets

1.  Find research online related to Borrelia burgdorferi found in any kind of tick or animal in your state.  Type "Borrelia burgdorferi in(name of state)" in your browser to find appropriate research.  Use this research as supportive documentation and include a copy with your letters.

2.  Rewrite the Lyme disease webpage from your State Health Department website.  Be very specific and only make claims that can be supported with documentation.

3.  Write a letter to your State Health Department Director.  Explain how devastating the disease is, how it has impacted your life and the lives of other patients in your state.  Specifically request that they post the language you have written on their Lyme disease webpage.  cc your State Governor's Health Policy Advisor.

4. Send a copy of the State Health Department letter to your State Governor's Health Policy Advisor with a letter asking the Health Policy Advisor to assist you with having the State Health Department provide more accurate information to the public, in the interest of public health.

5.  If and when the Health Department makes the changes you request, write thank you letters to the State Health Department and the Governor's Health Policy Advisor.

Note:  Always send correspondence Certified Mail - Return Receipt Requested.  If you do not receive a response from the Health Department or the Governor's Health Policy Advisor within two months, resend the letters again, Certified Mail - Return Receipt Requested.  It took an entire year of communicating with both offices in Arizona before action was taken.

If anyone needs assistance with this project, please call Tina Garcia at 480-219-6869.

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It may never be perfect, but the more correct information we can get them to add, the better off the public will be.

Here are some tips on what you can ask them to change:

Wrong Information: Many websites say that Lyme Disease is found mainly on the East Coast.

Correct Information: Lyme Disease is found in every state and on every continent except Antartica. By saying it is "rare" or "not endemic" in certain states may delay someone in getting the proper diagnosis. 

It is impossible to go by outdates human Lyme case maps. Up to date maps done yearly are by veterinarians, and there is Lyme Disease in dogs in every state.
Sources: lymedisease.org
http://lymedisease.org/lyme101/lyme_disease/lyme_disease.html
Lyme Maps

http://lymedisease.org/lyme101/lyme_disease/lyme_map.html

Canine Lyme Maps
http://www.dogsandticks.com/diseases_in_your_area.php
Lymeinfo.ca
http://www.lymeinfo.ca/lymedisease-geographicdistribution.aspx

Wrong Information: The CDC says that there are 30,000 new cases of Lyme Disease each year.

Correct Information: The CDC has now upped that number from 30,000 to 300,000.
Source: 

CDC Press Release

http://www.cdc.gov/media/releases/2013/p0819-lyme-disease.html

Wrong Information: Deer ticks are the only ticks that transmit Lyme Disease.

Correct Information: Lone Star ticks also pass Lyme Disease. Other ticks and insects also spread the other co infections associated with Lyme Disease.

Sources:

UNF Researchers Make Big Discovery About Lyme Disease

http://news.wjct.org/post/unf-researchers-make-big-discovery-about-lyme-disease

Thank you Tina Garcia for this awesome idea. 

States that have changed their information