Madison Area Lyme Support Group

Mission: To flood the White House with as many letters as possible in the month of May to increase awareness of Lyme disease and the issues surrounding it.

Rationale: May is Lyme Awareness month and, with the Lyme disease march occurring in Washington, DC at the same time, this will further generate awareness especially with the representatives in DC.

We encourage you to participate and, even if you can get one other person to participate, we can make a difference!

Instructions to participate

1. Print out the letter {We chose to make it a generic letter that both Lyme sufferers and their friends and family use. We are not having people write their own stories at this time as it increases the difficulty for many Lyme sufferers and we want to make it as easy as possible}
2. Sign your name on the bottom of the next page
3. Print out the letter on the second page of this document and place it in a GREEN envelope {The green envelope is the attention grabber}
4. Adding your own email or address at the bottom is optional
5. Address it to:
   The White House
   1600 Pennsylvania Avenue NW Washington, DC 20500
6. Send it on May 1st 2019 or throughout the month

*Things to remember: This is not about political parties or thoughts about who is in office, but to stand together in one voice to make an impact and create change. The letter may not include everything that you may think needs to be included, but with the complexity of this disease, it is important to focus on the key issues and to keep it as straight forward as possible

*We do encourage that if you want to share your story in detail or want to address issues that are not added in this letter, that you do so separate from this project. This is project is just one way to spread awareness, and we want as many people to be involved and send letters.

Letter states:

Dear President Trump:

There are only 30,000 cases of CDC identified Lyme cases each year. The CDC estimates the actual number is closer to 300,000 cases a year. That is 270,000 A YEAR that go undiagnosed or misdiagnosed according to the CDC standards. Getting a Lyme diagnosis is almost impossible because the CDC believes that their current two-tiered approach to testing for Lyme is sufficient, although there is evidence to show it gives false negatives over 50% of the time (this is the same test they have used for decades). Countless individuals have to pay out of pocket for testing that, is more accurate, but not currently approved. Some individuals have died because their diagnosis came too late.

The lack of physician education to Lyme disease is shocking. Many physicians will refuse to test for Lyme disease, if they do test, they are unaware of the ineffectiveness of the testing. Some physicians will not treat with positive tests or will undertreat. Some of the affected individuals that are lucky enough to get the “standard” treatment, but continued to have symptoms, will be told that they no longer have Lyme and that they should feel fine. Most are told they are either mentally ill,hypochondriacs, stressed out, or just to “suck it up.” All the while, these individuals are fighting debilitating horrible symptoms while trying to get the help they need.

The CDC is ignoring research that shows the bacteria is persisting after the standard dose of antibiotics were given. There are Lyme Literate Physician’s (LLMD) that believe and attempt to treat Chronic Lyme disease. Within the mainstream medical community, these physicians are seen as“quacks” taking advantage of a group of mentally ill individuals who “think” they are sick. Thesephysicians use multiple modalities and go against “standard medical guidelines” to help a group ofpeople that no one is helping, risking their license in the process. These Lyme sufferers have to search to find these physicians, and often must travel long distances, as well as shell out hundreds of thousands of dollars out of pocket.

They have lost jobs, homes, family, and friends to a terrible illness. The CDC has had decades to work for them and come up with testing and solutions. They have not, and it is evident that they will not.The people who have been pushing this under the rug need to be held accountable and Lymedisease needs to be addressed….by people that actually will address the real issue, Chronic Lyme exists and is destroying lives. They need to be heard, believed and helped.

To respond please send to _____________________________________________.

Sincerely,