Social Ambassador Profiles

These amazing people have taken on the task of being LymePowerOfUs Social Ambassadors. They are dedicated and passionate and want to transform that dedication into actions that increase awareness of Lyme disease, raise funds to train physicians and support LymeTap, and put an end to the growing epidemic of tick-borne diseases. Their stories are sometimes heart wrenching, often very sad, but more often than not filled with inspiration and hope. These are the faces and stories of people that are making a difference. Find out how you can join them.

Tara Pretends Eagle Weber
About Tara Pretends Eagle

I went undiagnosed for 25 years and passed it onto my son, Ranson Weber Horse. We wrote Senator Schumer because he had Lyme disease, he said our Senator Sherrod Brown would help us. It took 2 Senators to get my son tested. In Ohio we could not get tested or treated. My LLMD is Dr. Raxlen & my son\\\'s LLMD is Dr. Jones. After we became resistant to antibiotics we utilized Advanced Cell Training. Our story was on The Martha Fast Horse Radio Show last week.

Boynton Beach, Florida, US

Lane Poor
About Lane

Mine is a long story too, bitten 1983, neuropsychiatric began to appear in 2003, hard bio-physical crash 2008 with the 3 B\\\'s, babs, bart, Bb, and all of their most virulernt infections, major brain swelling included. Today, 2013, much improved, though just now I am coming out of a fairly severe \\\"North American Malaria\\\" babesioisis recurrence, mixing the allopathic and naturopathic remedies. In general I am more than hopeful that truth and clarity are clearly on our \\\"side\\\" now. Writing, counselling, speaking and lecturing. Some of my notes and cover sketches are at I also have a fairly calm video at Author, Advocate, Activist, I am getting well...

Newport, RI, US

Laura Grimshaw
About Laura

I am the typical story: never had a rash, never saw a tick, and became increasingly ill over many years before finally collapsing from exhaustion and pain. That was nine years ago; today I have lost everything, my house, savings, retirement, friends, peace of mind and sense of safety. Am fighting SSDI for disability, and without food stamps I\\\\\\\'d be hungry every day. Blessedly, I was a patient of an LLMD/ILADS member long before Lyme was ever in my vocabulary. After three false negative Lyme tests, and months of struggling to find the cause of my illness, she looked into my eyes and said, \\\\\\\"Laura, in my gut I know it\\\\\\\'s Lyme.\\\\\\\" . Without her knowledge and confidence, I wouldn\\\\\\\'t be writing to you today. To wit: last year, my mother died from ALS, which we were both certain was induced by Lyme. Her doctors would not to listen to us, treating me like a pariah for knowing more than they. I wish to get on my soapbox as often as possible, to educate others about the horrors and truth of this disease. If word had been out a two decades ago when I became infected, my and my mother\\\\\\\'s outcome might have been a very different story.

Northbrook, IL, US

laura wiist
About laura

Hospitalized October 27, 2012 with sudden severe headache, fever, confusion. Was a respected registered nurse working emergency medicine. Evaluated by 40+ physicians, including specialists- pathologists, neurologist, immunologist, cardiologist, endocrinologist, infectious disease, psychiatrist- with post viral chronic fatigue syndrome. After 20 months the 40th physician sent blood to IGENEX. The infection is now a disease. My body and brain are damaged beyond repair. It is my goal to encourage education, early accurate testing and treatment. Lives are ruined. I miss working. I miss having a life. As a social ambassador I will encourage positive change.

new braunfels, texas, US

Laurie Di Noto
About Laurie

About four years ago, I was staying at a beautiful resort in the Santa Barbara mountains. There were beautiful deer along side the lovely stream just outside our room, where we sunbathed... The hiking was wonderful. I developed a rash, and was diagnosed with ringworm. My health deteriorated rapidly and we spent many thousands of dollars with various doctors trying to figure out what was wrong...Two years later, I \\\"accidentally\\\" picked up a magazine with an article on a lady telling a strangely familiar story and there was a photo of the very rash I had gotten---the classic bullseye! I was confirmed lyme and co infections and did nine plus months of daily oral and IV treatment. It went into remission for a short time and I stopped the antibiotics. Sadly,I am once again spending days upon days in bed. It has derailed our lives, but will beat this and I want to help others avoid this nightmare...

Solana Beach, Ca, US

Leslie Sebastian
About Leslie

My daughter has been diagnosed with Lyme disease. She is 24 yo and bedridden for much of her day. We are lucky to be able to afford treatment and leave in an area with access to Lyme specialist.

San Diego, CA, US

Leslye Baldwin Mackelwich
About Leslye

I have been a Lymie for 20+ years, just diagnosed last year after going through the Western Medicine Mill like most Lymies. Gave this to my son in the womb:o( I know LOTS of people that have this disease and don\'t even know it:o( I think it is important to spread the word and educate the world, therefore I thought this might be a good step in that direction:o)

Plains, MT, US

Lillian Conner
About Lillian

At the age of 8 I went to bed one night a completely normal kid and the next morning I woke up with extreme OCD and anxiety. After visiting with my doctor I was diagnosed with PANDAS which means that whenever my body was faced with infection my antibodies would cross into the basal brain barrier resulting in the severe OCD and anxiety. For many years I struggled with an on and off battle with PANDAS and my brother also began to have PANDAS symptoms himself . My family went from doctor to doctor and could never find a solution. Luckily, my mom led the Dallas PANDAS support group where she kept on hearing Lyme Disease being brought up in her meetings and as she herself had been feeling ill for a few years she decided to get the whole family tested for Lyme Disease. All of my family ended up coming back with positive results and we finally found our answer. My whole family is now in the process of being treated and I am completely healed. So, I would like to be an ambassador so no other family has to search for 6 years to find the answer to their health problems like my family did.

Austin, Texas, US

Melissa Parmeley
About Melissa

I was diagnosed with Lyme in November of 2012 and I am still fighting the fight. Currently doing well with Rife and MMS.

Virginia Beach, VA, US

Amber Evans
About Amber

As an ILADS Social Ambassador I feel I could find my voice about this devastating disease and help others find their voice and their way. I am 30 years old and have had Lyme disease since I was 5 years old. I do not remember a time when I was not sick in my life. I want to share my story with others, help others, guide others, and help myself my sharing. My Mother and Father both have Lyme disease as well and many of my friends. I think I would be really good at this, and have the free time to do so, please allow me the chance to help others.

Columbia, MD, US