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.

Samantha Stewart
About Samantha

I am 22 years old about 5 months ago I found out I had lymes disease. I was getting weaker by the day and sicker. I did not know what was wrong with me. I just got back from Mexico on vacation in July, thinking maybe I picked up a sickness there, I was mistakenly wrong. I went to the dress and on the first blood test I actually found out I had Lymes and mono. Unlike a lot of stories I read. I was put on an antibiotics for three weeks and told that is all I could do. My mother researched lymes specialists and came across a Dr. who has cured, well helped many people , I just went to my second visit with him where he has put me on an antibiotic now for two months. I feel pretty good, this past visit he raised the dose, and the past day since I took more I have been feeling worse. As he explained when I took the antibiotic begin with you might feel worse before you get better. I go to the gym daily, and have always been very in shape and live a healthy lifestyle. I feel fortunate to not have it as worse as others but I want to help the ones that do and find a cure.

brick , Nj , US

Kory James
About Kory

I am a member but id like to be an ambasitor because if someone would have told me about this i would have take more precaution. I have these coinfections since 2007 when I moved here to Minnesota, I got bit by a NIMPTH but I had no idea what it was I just knew something but me but because it did not hurt i went to a new doctor freshly graduated and she sent me to a skin specialist who sent me to a specialist and drugs and cream that made me worse ive had several surgeries but i keep going in and it was always something. I got fed up after having sergery on both my legs. And when I could no longer walk I had to figure out what was wrong and did my own research and started homeopathic and Naturalpathic and use rife. I can go on and of the monies spent and the suffering i have endured that I will do everything i possible can to help others..Kory James

Menahga, Minnesota , US

Jennifer Brodfuehrer
About Jennifer

My name is Jen, and my husband Marcus was recently diagnosed with Lyme Disease. He struggles every day with symptoms that indicate he has entered the chronic phase. The most prominent include painful heart palpitations, panic attacks, constant muscle twitching, and, most recently, memory lapses. Not to mention general pain. Lots and lots of pain. He was fortunate enough that the ELISA test conducted by an infectious disease doctor came back positive. Not everyone is so fortunate. We are currently awaiting our appointment with an LLMD in our area for the proper treatment. I am interested in becoming an ILADS Social Ambassador because I NEED to do my part to raise awareness for a disease that is too often overlooked. There is so much unnecessary suffering due to this terrible disease. Let\'s stop this!

Leesburg, VA, US

Jena Stone
About Jena

For more than twelve months I have had symptoms that cannot be explained by doctors. Incredible chronic fatigue, awful pain that mimics arthritis and fibromyalgia, skin problems, increased floaters in my vision, the list continues. I\'ve been told I have depression, a mitochondrial disorder, possible early stages of MS, fibromyalgia, and that I\'m plain making it up. I went from athlete and avid hiker to tired old lady at the age of twenty-three. Through my own extensive research and want to find answers I have learned a lot about the epidemic of lyme disease, the great imitator. I lived in North Carolina for a few years and suspect it is quite possible I picked it up there. Do I have lyme disease? I do not know. I am researching local labs and the best testing process to go and test for it myself because I am tired of depression medication being thrown in my face. No matter where my journey ends up I am shocked by the lack of attention this disease is getting and also scared for anyone that has it because of what is happening in the insurance world. I would like to help raise awareness. I am a marketing student with experience in social media and hope I can use it for a good cause.

Salt Lake City, UT, US

Erica Cunningham
About Erica

My first experience with Lyme disease was when my beloved chocolate lab was bit by a tick in the late summer/early fall of 2008... less than a week later he was dead. I have lived in Maine my whole life & I have heard of Lyme disease before... mostly infecting dogs and cats & I knew that it was important to check for ticks after spending a day outdoors. But never did I think it could be so fatal so quickly. Since then I have encountered many people with Lyme disease through my workplace (I am a Medical Assistant at a local integrative & holistic physician's office) and have been fortunate to work with Lyme literate doctors who believe that chronic Lyme is a very real clinical diagnosis and light does need to be brought to the issue. Two of the five practitioners I work with have Lyme disease themselves and can personally relate to the strain this fatal disease can put on a human's immune system, their ability to function, as well as the effects it has on the person's family. I love to help people and I am already vocalizing the importance of Lyme Disease Awareness everyday to my patients as well as to my friends and family. Lyme Disease is something that cannot go unnoticed. I hope to help spread the information and help educate patients and their families. :)

Augusta, ME, US

Susan Peters
About Susan

Hello, I have Chronic Neurological Lyme Disease now for 15 years....initially diagnosed with Chronic Fatigue Syndrome. I am still alive today t age 66 because of a few caring, smart, and compassionate LLMDs over the years, I still have my ups and downs with Lyme and Co-Infections. My father recently passed away, and the stress put me in a little back on ABX. I have personally educated many physicians , I have met by chance, and gave them printed information about lyme, and Co-infctions. bout 4 so FAR that I personally knew in my little home town, came back later and said thanks for the info, it helped me figure out that was wrong with a few patients I have. I will always have a PASSION for awareness an educating health professionals about Lyme.

Laguna Woods, California, US

Susan Daniels
About Susan

I became ill in October, 2008. My doctor said I must have some unnamed virus. I was in and out of work for several months, I was a teacher. Finally I requested a leave of absence for the remaining school year. I requested referrals to more advanced medical facilities to no avail. Finally our banker recognized my symptoms and told me what I had. All by blood work had come back negative for Lyme. I found Lyme Literate doctor, Stephen Phillips, and was diagnosed. After almost 4 years of treatment, I am fairly my normal self most of the time. I continue on meds as I have not had 6 weeks without symptoms. I am hoping this is the year I can stop the meds.

Pilot, VA, US

suzanne sauder
About suzanne

About 7 years ago, strange things began occurring to my body. Over the course of that time, I saw 12-13 doctors. Lyme was never mentioned. Interestingly, one dermatologist did test me for syphilis for which I was negative. Now I have learned that syphilis is a spirocette as is the lyme bacteria. I never thought I would be upset to learn I was negative for an STD, but I was devastated, as I simply wanted my personal hell to have resolution. My brother sent me some research about Morgellons and Lyme. One of the authors I went to see in San Francisco. I was diagnosed with Morgellons May, 2015. He said that I would probably test positive for Lyme later as I did test positive for 2 co infections and had a few of the bands. He was correct and in late September demonstrated this. I am interested in becoming an ILAD\\\'S Social Ambassador because I want to do all I can to prevent others from entering the long nightmare I lived. Doctors cannot test for diseases for which they are unaware. Knowledge and research are our most realistic tools in preventing and stopping this disease.

dallas, tx, US

Susan Philkill
About Susan

My brother, Greg Compton, has been fighting chronic Lyme disease for about 10 years. What should have been the best years of his life, his 30\'s have been stolen from him. He married young, and planned to start a family. Instead, he has been battling this terrible, disgusting disease. He is currently in India for his fourth round of embryonic stem cell therapy, hoping to rid himself of the damage that has been done to his body and soul. I am hopeful that awareness of this disease is growing, but I want to help make that happen. It\'s scary how easy it is to get the disease. I live in Marin county, where ticks are everywhere. The fact that you can get bitten and now even know it, is alarming. We need to find a cure for this!

Greenbrae, CA, US

Kelly Downing
About Kelly

I am a wife, mother and special educator. I suffered for 15 years with odd ailments and misdiagnosed until I was paralyzed in my arms in January 2012. Through a friend I found a Lyme literate doc in May 2012. I was on a picc line of antibiotics, however my blood levels tanked and on day 6 of being off the antibiotics I became a quadriplegic in December 2012. I want to be an advocate for my family, friends, community and especially the students! By the grace of God and my unending support of family and friends I am battling this illness. I am currently trying to write a book, I just had a short documentary completed on my recovery and a newspaper article. Every 4 weeks I send out creative updates and awareness to the Nashua community, as well as family in hopes to educate and make people aware of this merciless illness. Here is part of my story... God bless!

Nashua, NH, US