On May 1, at the Capitol, it was a beautiful sunny day, blue sky and slightly windy. Approximately 100 Lyme and Morgellons patients and advocates gathered on the West side of the capitol to being their march for Lyme Awareness Month in May.
The CEHF held a Morgellons Conference on Sat and Sun at the Wyndham Hotel in Austin, and a bus carried 30 attendees from the hotel to the Capitol for the rally and march.
There were people in costumes, one dressed as a giant Texas tick, the other as a green lime, and another in a Lyme biohazard suit. Cindy Casey, Ex Director of the Charles E. Holman Foundation (for Morgellons Disease Research) and Joy Sablatura Rockwell, Co-Founder of the TXLDA led the marchers in chants.
LYME IS IN TEXAS
DO NOT NEGLECT US
Call: WHAT DO WE WANT?
Response — A CURE
Call: WHEN DO WE WANT IT?
Response —- NOW
Call: HEY TEXAS DON’T YOU CARE?
Response: LYME DISEASE IS EVERYWHERE
Call: Hey CDC Look again
Response: There are fibers in our skin
Speakers included Dave Claunch, VP of Legislative Affairs for the TXLDA, who spoke on current legislative issues, and hopes of getting SB315 to include a provision to require the TMB to list Lyme CME on their website.
Joy Sablatura Rockwell, Co-Founder of the TXLDA, shared her personal journey of getting ill with Lyme and how she started the Texas Lyme Coalition in 1999 which then became the TXLDA and affiliated with the national LDA.
She reminded people of the history of the 2000 Senate Hearings chaired by Sen. Chris Harris which concluded that doctors in Texas needed to be better educated about testing, diagnosing and effectively treating Lyme in Texas, as well as the TMB should not be disciplining physicians who treat with long term antibiotics for Lyme. She asked everyone to encourage their doctors to take the free CME on the TXLDA website. And concluded by suggesting patients be compassionate with themselves, after judging themselves for being sick, and being judged by others for their illness and limitations. Self love is part of the healing.
Adrienne Clements, a Lyme literate psychotherapist, spoke about her personal experience being a Lyme patient, how hard it was to get diagnosed and how she was dismissed by other providers. Several people shared they were moved to tears while she spoke.
Sam Arnold a Lyme patient, and singer/songwriter shared a song by Joni Mitchell. Joni Mitchell has Morgellons.
Cindy Casey, spoke about Morgellons and how most of those patients get a diagnosis of Delusions of Parasitosis. Dermatologists won’t even look at their skin to examine the lesions and fibers. Then she took a huge container of hundreds of pill bottles and dumped them on the Capitol steps to show how many medications Lyme and Morgellons patients have to take on a regular basis.
Ashleigh Crawford, an 18 year old from Corpus Christi, spoke about her plight as a high school student, being misdiagnosed and missing school due to illness.
Dave Claunch wrapped up, and thanked everyone from coming and encouraged them to take action with their representatives and senators.
I think it was a great success because we had 100 people show up, and there were thousands that were too sick to make it. I said a blessing for them, thanking them for their support from afar, and we sent them some healing thoughts and prayers.
It was a success because people bonded at the rally, Lyme patients who had only known one another via social network like FB were able to meet in person. It was a success because people walking by asked “What is Lyme?” or “My brother has Lyme” or “I have Lyme!”
There is a ripple effect. People are getting educated — physicians, legislators, nurses, counselors, friends and relatives are getting educated. And patients are getting diagnosed and treated. And that’s how we make a difference, and that’s how we measure success.
And there is more to do!!!!!