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.


N/ A
About N/

N/A

N/A, N/A, US

Susan Jones
About Susan

I have been misdiagnosed for the last 25 years. In the fall of 2013 I was given a gift of a holistic Dr.'s name in my area. My husband went first because of chronic health problems and during our visit the Dr. got real interested when I said I had fibromyalgia. So I made my appointment and went in November, got tested for Lyme Disease, and tested positive for Bartonella,and Lyme Disease. I am currently being treated with antibotics and am very passionate about making other Southerners aware of Lyme Disease

Lakeland, Tennessee, US

Ireland Horan
About Ireland

My name is Ireland and I am 14 years old! I am currently fighting Lyme Disease. I had so many different symptoms and since it is so hard to diagnose Lyme, I was diagnosed very late after dozens of hospital visits. I immediately started the 21-day treatment although it just made me feel worse. I was having more nausea, more numbness, and less control of my body altogether. There are many days I can't go to school because my body is numb and I can't even move. A simple task such as waking up is easy for some people but for me it is a big struggle. Despite all of this, I feel that everything happens for a reason and that this is a blessing rather than a curse because Lyme Disease has forced me to work harder than I ever have before. I have become a more positive person throughout this experience because when you are struggling with something, if you are negative and complain, it makes everything 10 times worse.

Ridgewood, NJ, US

Jessie Mowry
About Jessie

I was 36 years old when I was diagnosed with Lyme Disease and it's 3 additional coninfections. Before that I can not remember a day past 7 yrs old where I didn't feel sick. As I grew and my life unfolded; college, marriage, then divorced...lost two children, then embarked on 2 careers... I began accepting that I may never stop being sick through it all. I was getting slower at everything, losing massive amounts of weight, the constant pressure in my head felt like I was a prisoner of a torture device, and soon my speech patterns began to emulate someone who'd had a stroke. Some days I'd wake up only to find that I couldn't remember my last name or birth date, or what day it was, or what the green color at the stop light meant. The more I sought out doctors of every kind, the more I got misdiagnosed or was just simply told there was nothing wrong with me. Years of this caused me to contemplate suicide more than once- just so that I could stop these crazy pain cycles. I felt like I was trapped inside myself. Finally, the day that I was diagnosed with an answer, was the first day I actually began living. NOW I have EVERY reason to live! And so If I can help others find a reason to live too, then my purpose is fulfilled.

Petaluma, CA, US

Tinnie
About Tinnie

I want the world to know about this awful disease that ruins your life and takes it away. I want doctors, politicians, insurances to aknowledge Chronic Lyme Disease, make sure people get diagnosed properly, treated properly. I want them to invest in research for better tests and treatment. I want them to help really sick people, instead of letting them die away slowly.. I cry it out loud: help Chronic Lyme Disease patients all over the world!

antwerpen, antwerpen, BE

Stacey Carlson
About Stacey

I was infected in June of 2009 in the area of Hayward, WI, presenting with a bulls-eye rash. My primary physician did not heed this warning sign nor the myriad of symptoms that followed including but not limited to horrendous pain in the soles of my feet, brain fogginess, petite mal seizures, hair loss, bladder irritability, and tremendous joint pain. Although awareness is growing a great deal on the East Coast, here in the Midwest, Lyme disease is still ignored completely even with tell-tale signs and symptoms. My primary goal via Lymeblue is to spread awareness primarily in Illinois and Wisconsin to prevent others from this fate. Due to the loss of wages as well as the medical costs incurred, I was forced to forfeit my home. My husband and I have moved in with my parents for the time-being. Due to these costs and trials, the secondary ambition of Lymeblue is to assist Lyme patients with the staggering costs of treatment. Lymeblue is in its infancy; however, the aspirations are boundless. Several fundraising activities are being launched currently and working with ILADS would be a tremendous boost to my cause.

Caledonia, IL, US

SAM PILNY
About SAM

I am in recovery from Lyme after almost 7 years. I was bit by a tick while cycling back in 2007 and was misdiagnosed for 6 months and got very sick. Went to different LLMD\'s for a few years with some results but always went downhill. The summer of 2012, I was rushed to the hospital with intense brain pain, diagnosed as a \"headache\" and sent home. Found my last LLMD soon after and started 4 months of IV antibiotics ending in December 2012. The last year, has been up and down. My thyroid and all hormone levels were out of whack and my LLMD has been \"rebuilding\" me. Right now, I am about 85% better and back riding my bike inside for the winter and just started lifting weights. I hope to be 100% by summer. I want to help raise awareness and money with you and from my website I am just creating. I want to help raise money for patients who cannot afford long term IV after insurance companies decline them, which is what happened to me.

GLENOLDEN, PA, US

Audrey de Encio
About Audrey

My Lyme journey began in Napa Valley, CA. I believe I was bitten there about 7 years ago but did not begin to show symptoms until about 6 years ago. In 2008 I was in a bad car accident that would complicate everything. For the last 5 years I have thought that my chronic knee pain was a direct relation to my car accident. The truth is I believe the car accident activated the symptoms. What began as annoying knee pain led to very painful knee pain and eventually spread to my whole body. I went from being unable to walk around all day to barely being able to stand long enough to do dishes. It was progressive and took 5 years to get to this point. Every time I thought it couldn\\\'t get any worst I would think back to the previous 6 months and think to myself \\\"Wow, I can\\\'t believe I used to be able to do that!\\\" The past year I went from being a full time A student to now being unable to return to school. I now have pain in all my joints, insomnia, constant exhaustion etc. I am now on my second treatment this year and am trying to stay positive. I want to become an ILADS S.A to spread the word and connect with people. I have spent 1/2 of my 20\\\'s in pain so now I want to act as an advocate so hopefully others can be diagnosed earlier!

Sherman Oaks, CA, US

Michele Miller
About Michele

I lost my Mom on February 9, 2013 to late state lyme disease. My Mom was so full of life until she was diagnosed with what we thought was the shingles. Her doctor saw a rash and prescribed a dose of steroids. Her health got worse and my Mom then started with Bell's Palsy. An MRI ruled out a stroke or minor TIA, then was referred to a neurologist. The neurologist diagnosed her with ALS which to her was a death sentence. After two other neurologists that gave her the same diagnosis, my Mom then sought another opinion with an holistic physician who tested her for lyme through the Western Blot testing. Two weeks later, she tested positive for late stage lyme disease. Reading my Mom's journals, I found that she didn't have the support she needed to battle this illness. My mission is to not only provide support to many who have lyme but raise awareness. It is a honor to be a social ambassador.

Worcester, Massachusetts, US

Mie Athearn
About Mie

I have a Lyme disease and Rheumatoid Arthritics. I understand how hard to live with these diseases. I'm a Japanese came America 2005 for marriage. I was diagnosed 2009 winter then had started the treatment mostly by antibiotic medication. Rheumatoid Arthritis was diagnosed 2012, I have had struggled carry on. I didn't have any health insurance in America then my husband had had to earn money for me. He just deserved for me for 8 years just put his time and energy for my recovery. I realized we would not be able to be happy if we continue such life. We just recently decided to divorce for sake. I'm going to back Japan this September. To live in America having chronic disease is so hard, I knew and, I wanted to let people know through my story then if they will feel not the right something about current American Government policy. And I wish if many people will understand that, we a patient who is suffering in this circumstance really need to bond for raising each voice; "We have a right to live happy in peace of mind anytime any place." My husband and me, talked we will meet again in Thailand where we believe one of our goal, after my treatment in my home country, in future, if we still wish to live together in our old age, we will be able to start again another new life. This is my story and testimony.

Rockland, Maine, US